1. technology and computing

TOWARDS THE IMPLEMENTATION OF
PROFESSIONALLY-LED ONLINE SUPPORT GROUPS
FOR CANCER PATIENTS:
REPORT ON THE NATIONAL WORK,
THE BC EXPERIENCE
An Initiative of the British Columbia Cancer Agency
Funded by Rebalance Focus Action Group,
The Canadian Partnership Against Cancer
Submitted by Joanne Stephen, PhD., May 2008
ACKNOWLEDGEMENTS
We acknowledge the members of the following subgroups who have contributed to this and other
development work:
National Group
Joanne Stephen, BC
Richard Doll, BC
Gina Mackenzie, BC
Karen Flood, BC
Gregory Huebner, BC
Heather Rennie, BC
Michael Speca, AB
Jill Turner, AB
Helen MacRae, AB
Bunty Anderson, MB
Jill Taylor-Brown, MB
Karen Fergus, ON
Sue Keller-Olaman, ON
Lise Fillion, QC
Deborah McLeod, NS
The Wellness Community Collaborators
Mitch Golant, VP Research & Development
Bill Shaffer, Senior Director Virtual Wellness
Community
Lynn Ryker, Director of Online Initiatives
BC Cancer Agency Group
Joanne Stephen, Research & Project Leader
Gina Mackenzie, Program Leader
Karen Flood, Clinician
Heather Rennie, Clinician
Gregory Huebner, Clinician
Michelle Rahn, Graduate Student
Jennifer Macdonald, Coordinator
Western Research Team
Joanne Stephen, BC
Michael Speca, AB
Jill Taylor-Brown, MB
National Alliance for Psychosocial
Oncology and Supportive Care Online
Steering Committee Members
Joanne Stephen, BC
Michael Speca, AB
Jill Taylor-Brown, MB
Karen Fergus, ON
Sue Keller-Olaman, ON
Lise Fillion, QC
Deborah McLeod, NS
TABLE OF CONTENTS
Acknowledgements
ii
Table of Contents
1
1.
Introduction and Organization
2
2.
Background
2
Rationale for a National Strategy and an Evidenced-Based Approach
3
Role of Rebalance Focus Action Group/Canadian Partnership Against Cancer
3
3.
Vision, Objectives and Goals of the National Group
3
4.
The BC Experience – The First Professionally-led OSG’s
4
5.
Current Status of National Work, The BC Experience
5
6.
Next Steps
6
Appendix 1: Meeting of the National Online Support Group Team and the Wellness
Community, November 30, 2007 Summary Notes
8
Appendix 2: Meeting of NAPSCO Steering Committee March 27, 2008
Summary Notes
Appendix 3: Notes on Professional and Organizational Issues
14
16
Appendix 4: Activities, Procedures and Protocols, Lessons Learned from the BC
Experience
20
Appendix 5: Online Support Group Protocol
28
Appendix 6: Suitability Assessment Script
29
Appendix 7: Study Enrolment Interview Script
32
Appendix 8: Participant Information & Consent Form
36
1
1. INTRODUCTION AND ORGANIZATION
The objectives of this report are twofold: 1) to inform stakeholders of work conducted to date
by the Rebalance Focus Action Group, Technology Subgroup, recently formalized as the
National Alliance for Psychosocial and Supportive Care Online (NAPSCO), and report on
Year One activities of a Two Year National Plan for developing and piloting professionallyled Online Support Groups (OSG’s) for cancer patients and their family members; and 2) to
share our experience in BC, where we have begun conducting OSG’s, and in so doing, have
identified and worked through numerous issues, and developed procedures and protocols,
that will enable future work.
The first section details the context and key points from the national and BC work. The
Appendices document the work to date in greater detail, and contain information that will be
useful for others intending to develop and evaluate additional OSG’s.
2. BACKGROUND
Stakeholders in a Canadian Strategy for Cancer Control (CSCC) envisioned a future where
all Canadians have access to quality supportive care options that improve quality of life for
cancer patients and their families. This vision is challenged by our cancer care system which
faces geographic barriers, financial resource constraints and a fragmentation between
provincial care centres and health authorities. Innovative means are needed to deliver
professional supportive care more widely.
Communication technologies offer a mode of delivery with potential to improve access. With
its potential to reach underserved populations like rural, elderly, homebound, and ethically
diverse Canadians, ‘telehealth’ is an opportunity to increase access to information,
education and emotional support across the cancer continuum. Seeing the potential of
telehealth, the CSCC- Rebalance Focus group commissioned a report: “Improving Access
to Psychosocial and Supportive Care: An Investigation of the Potential of Technology”. This
report, completed in 2004 by staff of the Sociobehavioral Research Centre, BC Cancer
Agency, identified professionally-led ‘real time’ online support groups (OSG’s) as a
particularly promising approach.
In 2004 and 2005, CSCC-Rebalance Focus funded two national workshops. The Wellness
Community (TWC, a community based, U.S. cancer support organization) was identified as
an international leader in providing OSG’s, and were invited to present their model.
Psychosocial oncology program leaders, clinicians and researchers were invited to learn
about TWC’s work, to consider relevance for their own setting and establish interest in
forging a national collaboration. Eighteen professionals from 6 Provinces, the VP of
Research and Development and a researcher with TWC, met in Vancouver BC. A
Sociobehavioral Research Centre researcher organized and facilitated the meetings, and a
number of BC Cancer Agency staff were also in attendance. As a result of the first workshop
there was a commitment to train a cohort of expert oncology-based clinicians in this
modality, and as a result of the second, a vision statement was crafted and endorsed by the
group, and a small research group formed.
2
RATIONALE FOR A NATIONAL STRATEGY AND AN EVIDENCE-BASED APPROACH
The CSCC and CPAC are predicated on a vision of collaborative activity as the mechanism
for most efficient, rapid and powerful solutions to current challenges in the cancer care
system. Professionally-led OSG’s are without Canadian precedent, innovative and largely
untested.
It is our belief that OSG development also requires a national approach – a pan-Canadian
collaborative of program leaders, researchers and clinicians in major centres of patient care,
with a common mandate to serve the cancer population within a context of evidence-based
healthcare.
Our strategy is to bring high quality research and clinical leadership to the development of
this area for Canadian cancer patients and providers. Feasibility and effectiveness research
will ensure an evidence-based foundation of professionally-led OSG’s. In the activity of
conducting research, knowledge and clinical expertise and capacity is developed. Over time,
that knowledge and capacity will be transferred to other supportive care organizations
interested in the promise of the modality.
ROLE OF REBALANCE FOCUS ACTION GROUP/CANADIAN PARTNERSHIP AGAINST
CANCER
The Rebalance-Focus Action Group has provided leveraging support for the work to date.
The Action Group funded the first 2 workshops that enabled the initial formation of a
collaborative group. Those 2 meetings were used to leverage provincial funding (in BC,
Alberta, and Manitoba) for training of a first cohort of clinicians, and in-kind support for
research proposal preparation.
During the 2007-2008 budget year, the Rebalance-Focus Action Group/CPAC support
enabled 1) BC to share knowledge and technology developed from the first research project
with Alberta and Manitoba partners; 2) adaptation to already-developed technology so that
additional Provinces will be able to launch demonstration groups in Year 2; 3) supported
training of 3 additional counsellors in Ontario, Nova Scotia and Quebec; and 4) funded a
third National Workshop of clinicians and researchers, and a meeting of the newly formed
national Steering Group. There is little doubt that without the support of Rebalance-Focus
and CPAC, professionally-led OSG work would currently exist as an isolated initiative in BC.
3. VISION, OBJECTIVES AND GOALS OF THE NATIONAL GROUP
The national group is motivated by a common vision: “Accessible, effective, high quality
professional psychosocial support for cancer patients and families no matter where they
live”.
The objectives of the national work has been: 1) to build capacity across Canada to deliver
professionally-facilitated online support groups for cancer patients and caregivers who are
currently underserved because of barriers to access, and 2) to form a national
collaboration of professionals able to develop the potential of OSG’s, and other internetbased educative and support resources for people living with cancer, through research.
3
Dr. Joanne Stephen, member of Rebalance Focus Action Group and Chair of the national
OSG group, initiated the national work and identified a two year plan. Year one was to begin
capacity building and collaboration, and piloting OSG’s in the western provinces. Year two
was to extend the demonstration groups and members of the collaborative beyond Western
Canada to Ontario, Quebec and the Maritimes, and to evaluate demonstration groups with a
common framework.
The following specific goals for collaboration and capacity-building for the 2007-2008 year
were to:
•
•
•
•
•
Increase the number of Psycho-social oncology counsellors competent to deliver
text-based, real-time groups across Canadian provinces
Form a national Alliance to champion the vision, and inform and implement a work
plan for additional demonstration OSG’s
Adapt the Western study website to enable national demonstration groups
Identify and resolve developmental issues related to implementing professionally-led
OSG’s within the health care system (ie, organizational, professional, legal,
technological issues related to OSG’s)
Pilot 3 demonstration groups, including one cross-provincial group
4. THE BC EXPERIENCE – THE FIRST PROFESSIONALLY-LED OSG’S
A study funded in BC (Moving Forward after Breast Cancer: A pilot Study of an Online Skills
and Support Intervention for Post Treatment Younger Women) offered the first opportunity
to identify and work through professional and organizational issues related to OSG’s, and to
develop enabling procedures and protocols. A second study (Enhancing Access to
Supportive Care) offered the opportunity to begin transferring the research activities and
protocols into the program development context, and to pilot OSG’s with additional
populations.
The provision of professionally-led OSG’s is an emerging area with little precedent, and as
such, required working through issues that could not have been known until research was
launched. The primary issues are risk.
Consultation and review revealed a polarization of views with regard to risk. Some
researchers and organizations expressed the view that OSG’s and other ‘psychotechnologies’ are so risk-laden, due to uncontrollable privacy and safety factors, that they
should not be pursued. On the other hand, many others articulated a pragmatic view that
patients are already seeking and accessing OSG’s and other psycho-technologies, and that
online services are most likely to be safe and effective when delivered by professionals who
develop and maintain expertise. The ethical issues have been articulated, and best
practises identified. The task is to design and implement procedures and protocols that are
appropriate to the specific population being served, and professional/ organizational context
and concerns.
This is the view of the national group, and the approach taken in BC. The ‘BC Experience’
(Appendix 4) documents the steps taken in BC to identify and resolve issues related to
delivering OSG’s for BC Cancer Agency patients.
4
5. CURRENT STATUS OF THE NATIONAL WORK, THE BC EXPERIENCE
The primary work of Year 1 was developmental, and during the budget year of 2007-2008,
the following goals were met:
•
The number of trained oncology counsellors was raised to11. In addition, a training
model agreement for Canadian counsellors, with TWC, has been formalized. This
involves, in addition to the 10 week co-facilitation training with TWC, a monthly online
Canadian Supervision meeting facilitated by a TWC facilitator. This meeting allows
for novice and expert OSG facilitators to increase learning and receive supervision
for current groups, thus deepening capacity for competent and ethical professional
practice. Four additional counsellors from other provinces are awaiting training. The
Steering Committee have identified criteria for trainees, which include professional
qualifications as well as endorsement from a sponsoring organization of intent to
contribute to the national collaborative effort.
•
2 pilot groups have been completed in BC (young women with breast cancer), 2
more are underway in Alberta and Manitoba (rural women with breast cancer),
another 2 are preparing to launch in BC (men with prostate cancer; family caregivers
of palliative mixed diagnosis cancer patients) and another in Manitoba (mixed
diagnosis rural cancer patients). Descriptive data gathered to date suggest value to
patients and feasibility of the OSG’s within the healthcare context. A formal
evaluation report will be available June 2008.
•
The BC and Alberta/Manitoba study website has been adapted to enable additional
demonstration groups. The national website enables enrolled patients to access a
state-of-the-art secure chatroom with features including a distress thermometer to
evaluate change in distress, emoticons to facilitate supportive online communication,
and a private messaging feature for facilitator training. In addition, enrolled patients
can complete the informed consent procedure online, and access secure and
validated online surveys that will enable a collaborative evaluation of the
demonstration groups.
•
Extensive consultations and research resulted in identification of the key issues that
must be addressed before offering professionally-led OSG’s. These are Patient
confidentiality, privacy and data security (standards of confidentiality, protections and
limits of confidentiality, release of information, and data encryption, security features
related to technology); Defining scope of practice (competence, but including
training, qualifications, ongoing education and supervision; maximising benefit and
minimizing harm); Patient safety (screening, emergency contact, information about
local providers; verification of identity) and Risk Management (all of the above and
measures to defend against suits alleging negligence, practicing outside boundaries
of competence, or failure to obtain informed consent).
These issues were resolved in the BC context, and solutions successfully transferred
into other contexts. While each province and setting will require a working through of
these issues, documentation exists that will facilitate authorization and acceptance,
thereby making the implementation process elsewhere more efficient. (See
Appendices 3-8).
5
•
A third training workshop was held, which resulted in the formation of a PanCanadian steering group for the national work, and a formal agreement on
membership, mission and vision of group. Members from Ontario, Nova Scotia and
Quebec are currently working towards demonstration groups in their Provinces, and
oncology counsellors to run these groups are in training. The national group agreed
to a name – the National Alliance for Psychosocial and Supportive Care Online
(NAPSCO). A steering committee was identified, and reached consensus on a
number of activities and next steps including the endorsement of a position for crossProvincial OSG’s.
The Appendices provide additional details and documentation of the points raised above.
Specifically, Appendix 1 and 2 are summaries from the National Workshop and Steering
Group meeting; Appendix 3 lists the key issues and ethical guidelines for delivering
professionally-led OSG’s, and Appendix 4 describes the BC Experience of setting up
OSG’s. Appendices 5 through 8 are further supporting documentation from the BC
Experience: the Protocol Schematic, the Screening Interview, the Informed Consent
interview, and the Consent Form.
6. NEXT STEPS
There are OSG’s currently underway in BC, Alberta and Manitoba, within the context of
funded research. Continuing to leverage this work into the national arena will deepen their
impact and create opportunity for sustainable program development. There is a national
group of program leaders, researchers and clinicians (NAPSCO) who are committed to this
national vision, and will work to see it realized provided that there is continued support for
meetings and coordination at a national level. Additional funding to assist the running of the
next demonstration groups will facilitate timely delivery.
More demonstration groups across Canada
The OSG’s currently underway, and about to launch, are being evaluated and initial results
will be available summer 2008. There are 3 groups being planned for the fall 2008: an
Ontario OSG for peer navigators, in partnership with Wellspring; an OSG for couples with
reproductive cancers in Nova Scotia; and an OSG for rural oncology nurses in Quebec. The
steering group is working with the peer-led OSG team to develop a common measurement
framework that can be used to evaluate all OSG’s. We intend to submit research proposals
to expand evaluation efforts, and systematically compare peer and professional OSG’s.
Identifying mechanisms for cross provincial groups
The ability to offer cross-Provincial groups is key to a national vision of coordinated OSG’s
accessible to all underserved Canadians. A national lobbying effort is needed to overcome
jurisdictional barriers at the professional and organizational level. The Steering Group are
exploring methods to make cross-provincial groups possible, (specifically, reciprocity
agreements between Provincial Cancer Agencies, and concurrent lobbying of national
regulatory bodies), and with continued support, are well-positioned to realize this.
Guidelines for Professionally-led OSG’s
An outcome of the rigorous training and expertise that NAPSCO clinicians are gaining
positions them to lead work in developing guidelines for professionally-led OSG’s. Our
6
partnership with TWC who are currently formalizing their training modules will contribute to
this effort. NAPSCO is prepared to lead this work.
New partnerships and NAPSCO members
The members of NAPSCO are dedicated to piloting and evaluating a range of innovative
professionally-led online ‘psycho-technologies’ for Canadian cancer patients and their family
members within the context of national collaboration and eventual sustainable programming.
The vision requires growth and transformation of NAPSCO and its current membership. We
are actively seeking to expand membership and partners, and to make linkages with other
Canadian technology-based supportive care leaders, in order to further develop the work
beyond 2008-2009.
7
APPENDIX 1
Meeting of the National Online Support Group Team and The Wellness Community
November 30, 2007 Vancouver BC
Summary notes
1) Welcome and Introduction: Joanne Stephen (8:30 – 9:00 am)
Joanne introduced the day by presenting an overview of the Rebalance FocusHealth Technology initiative - work to date, vision, mission, planning Phases and current
research activities (see attached PowerPoint presentation). She introduced a diagram that
details the streams of work to date, and next steps needed, for the working group. She
identified that a secondary goal of the day (in addition to skills/knowledge development) is
identifying and building consensus to shape team development and forward the national
agenda.
2) Presentation from The Wellness Community: Mitch Golant (9:00 am – 10:00 am)
Mitch presented on TWC updates and results of a recent study “Benefits and
Challenges Experienced by Professional Facilitators of Online Support Groups for Cancer
Survivors” (see attached PowerPoint presentation). The main focus was describing the
essential roles and skills of online facilitators; facilitator difficulties and challenges; and
comparison of face to face (F2F) vs. online support group (OSG) facilitator issues.
Secondary focus was demonstration of new TWC site, including viewing a prostate cancer
decision making tool they are preparing to launch, and new discussion boards on first page
for asynchronous communication and community building. Mitch identified that these shifts
were designed to enhance ‘stickiness’ (ie, repeat visits) so that the TWC site is closer to
being a vital and dynamic community rather than website.
3) Group Discussion: Incorporating the learnings from TWC as we move forward the
Canadian agenda (10:00 am -12:00pm)
Group had questions about how TWC has worked through a number of ethical,
informed consent, legal concerns.
• Confidentiality/Safety/Privacy – what are the limitations? Ethical/privacy concerns
need to be brought up as part of group process with the ppts in the OSGs – not
absolute! Eg, Caregivers can have access to transcripts with pts login which may
limit online sharing ; Mitch gave example of wife using dead husband’s login to join
group and let them know he’d passed away; Our control as OSG providers is limited
– legally the organization is not responsible if people share their passwords and
confidentiality has been broken; Should something happen to/with a ppt, is facilitator
liable? no according to TWC legal council - we aren’t in a position to assess a
person’s psychological state – liability lies with the end user
• Cross-Jurisdictional/professional regulation issues & OSG -- TWC has not taken on
this issue yet. Mitch wants to consult on this/be involved too as this is an
international issue as well. Need to identify or develop reciprocity between
professional groups cross-provincially.
• Online Consent vs. current BC research practice. A click is similar to a signed
release according to documented legal cases in the US (Mitch); Prairies study is
implementing an electronic submit for consent
8
•
•
Group Format of OSG’s ‘how do they work’. TWC groups = 12 in a roster, usually 8
show up, groups tend to remain together for about 12 -18 months then someone
drops out and someone who is on a waiting list takes their place – it’s a stepwise
enrolment (Mitch)
TWC Current Research Questions: Do anger, frustration, confusion get expressed in
OSG and how can facilitators encourage this expression? Are group members
‘attached’ in the same way that F2F participants are – eg, do they think about their
group in between sessions?
Group Consensus was formed on the following from the morning discussion:
•
•
•
•
The ethical, privacy, legal issues as described by Mitch for US context, resolved
using principle of transparency, are reasonable -- the Canadian group felt
comfortable that we could apply same principles and provide ethical OSG practice.
We must seek to make policies based on the norm not the exceptions – risk
management is one consideration but should not override practicality and sensibility;
In order to manage the multiple professional, practical and access issues, we must
continue to champion the vision of national OSG’s -- and must therefore prioritize
working through the cross-Provincial and jurisdictional issues;
Implementing an electronic submission of consent form – though still discussing by
telephone first – should be standard for all OSG’s.
Lunch 12:00 and 12:45. After lunch, the group broke into 2 sessions – 1 for clinicians, 1 for
clinician-researchers and program leaders.
4) Advanced Online Clinical Skills Training: Facilitated by Mitch Golant (1:00-2:30)
All clinicians in computer lab participated in this group training. Earplugs were used to
simulate online/distant experience (see attached transcripts for content).
Clinician Debriefing Discussion:
•
Participants expressed a sense that they had worked really hard and
were tired after an hour of participating; initially felt that had to type so
fast and respond to all the threads, but gradually slowed down and
picked up threads of the conversation at random. Group realized that
response to threads tends to be random and threads are not ignored
on purpose or picked with any intention, they just simply are
responded to and one ppt can’t respond to all threads due to the
speed with which the communication takes place
•
One participant expressed having felt really isolated; another noted an
‘Aha’ moment when realized that she had nodded to anothers
comment but not responded online
•
Group appreciated the modifications to the chat platform – liked the
different color fonts as it facilitates tracking of each other. Mitch noted
that most ppts had big smiles – a common group training experience
5) Towards a Common Evaluation Framework and Formation of a National Steering
committee: Facilitated by Joanne Stephen (1:00 – 2:30)
9
Joanne started the session with the following questions to the group: what are
the priorities to focus research and develop a common evaluation framework around? Can
we identify a few research ‘pillars’ or ‘streams’ that will shape and be represented in every
OSG demonstration project? What are the priority actions to move this work forward?
Discussion:
1) Priorities are program sustainability and access – our mandate is research serving an
improved health service agenda
•
Question was raised about how to operationalize and measure notion
of ‘capacity development’ – important and challenging work ahead.
•
One idea raised -- social network analysis – Donabedian model
2) 3 ‘pillars’ can direct research priorities and evaluation, which follow from team
mandate:
• Access- 1) must target hard to reach/underserved/at risk populations
and we must evaluate our success at reaching those populations, 2)
must move forward considering useability – and evaluate success at
useability
• Capacity/feasibility for program implementation: 1) we must consider
the long term and ability to develop lasting resources; 2) research must
be relevant to practice, 3) training of counselors is a major limiting factor
of building groups and research
• Innovation/New Modalities: 1) we are piloting OSG’s with the intent of
breadth and variation in interventions – do not want to duplicate I/V’s or
reach the same population over and over. The overarching research
question is “what is the potential, what can we do with this approach?”
3) Professional issues and counselor training are limiting factors that this group must
resolve.
• Joanne should hire someone to conduct an environmental scan of
regulatory policy/standards/liability for psychologists, counselors, social
workers, nursing across the provinces. This should be packaged into a
report for us and our organizations to distill and endorse a position. We
will draft an article for dissemination. Each member of the group should
go to their own organization to identify risk/indemnity information to
determine “am I covered for out of province patients? Am I covered for
offering support online?”
• We must work to get more oncology counselors trained ASAP. Who
receives training needs to be determined by criteria. The goal is PanCanadian representation but group recognizes that this relies on
researcher/leadership capacity to ensure demonstration groups.
• Counselor must be attached to a specific demonstration
project /must be an agreement for demonstration group –
ie, connected to a champion/researcher
• counselor must be connected to a cancer organization or other
organizational structure to ensure sustainability
• Ideally, the following provinces will build capacity with new
trainees in 2008: Quebec (2), Ontario (2), Nova Scotia (2),
Manitoba (2), BC (1), Newfoundland (1), Alberta (2).
4) Tentative plans for next demonstration projects include the following:
10
•
•
Year 1 groups to be underway or completed by March ’08 –young
women with breast cancer (BC); rural women with breast cancer
(AB); Caregivers (BC); Prostate (BC) and mixed diagnosis/rural
(Manitoba)
Year 2 groups to be underway by fall 2008 and into 2009 – Bone
Marrow Transplant (Alberta); support for young women Volunteers
(Ontario); Sexual rehabilitation for gynecologic cancers (NS) and
support for vicarious trauma for oncology nurses (QU).
Recommendations for next steps for Steering committee
•
•
•
form a subcommittee to explore health system evaluation and begin the work of
creating a common evaluation framework
begin resolving jurisdictional/professional practice issues, and among ourselves,
draft and endorse a position statement
initiate more training -- 1st priority: Where there is research and leadership capacity
for the counselors to begin applying their skills and 2nd priority: where there are
currently fewer counselors
6) Clinical/Professional/Team Development Planning Session (3:00 – 4:30)
Joanne showed again the diagram of the work to date, identifying the 4 primary
streams of activity (research, organizational and legal issues, IT platform development and
clinical/professional development). Discussion focused around 2 primary areas: (1)
clinical/professional development and (2) further development/formalizing of the team.
Clinical/Professional development:
• How to best utilize the online Supervision Meetings? Mitch and Joanne had
previously discussed bringing a TWC facilitator to Canadian supervision meetings;
Mitch reported that Anne from TWC has agreed to participate and will bring sections
of transcripts for discussion focus; Mitch recommended weekly but the group felt we
couldn’t commit that much -- biweekly for facilitators in groups more feasible.
• Discussion boards – Mitch recommends using these as a supervision tool particularly
in the beginning as a way of remaining connected in between supervision meetings.
Can also insert transcripts onto discussion board – Anne can put together a posttraining for everyone.
• Who should take part in the Supervision meetings? Mitch recommended that
clinicians should complete the training prior to attending supervision meetings to
optimize the quality of supervision experience. Was suggested that professionals
who are “waiting in training” should have something to be reviewing/learning –
papers, transcripts from current groups. If so, must ensure we have consent of
participants.
• Mitch reported that webinars are another format for professional development and
are in the works at TWC for professionals. We will stay posted.
Consensus on next steps for clinical/professional development
11
•
•
•
TWC facilitator Anne Gessert will lead the monthly Canadian online supervision
meetings beginning in Spring. Once the team is ready, we will increase to biweekly
meetings
Canadian supervision is for trained OSG counselors only
An orientation package should be prepared for Trainees in waiting
Brainstorming for Team Development
•
•
•
We should formally describe the history and the evolution of the program to date in a
manual; we should have a name for this organization of people that captures our
vision; the name should transcend any link to specific funding – represent a broader
vision. Ideas included TIPS- technology, innovation, psychosocial and supportive
care; POSIT – psychosocial oncology and supportive innovative technology; VIVA –
virtual innovations vision access; POSTT – psychosocial oncology support through
technology
We should think big -- brand ourselves as a group of professionals who are expert in
health technology; build a 5 year plan; think how we can align our current career
paths with the online work; develop a business case nationally and internationally;
consider cross-cultural & rural and their intersection; identify a long-term vision for
this group so that governments or organizations will seek us for help in proceeding
with online work; put pressure on the system by putting in place an action plan.
We should think within the scope of the expertise in the room -- the team members
are clinicians and researchers not business/policy makers. We would work within a
larger umbrella organization if it were to form, but our focus is more modest and
circumscribed there is a need to put energy into OSG’s and become experts but not
the desire to be taking on every kind of telehealth.
Consensus on Team identity/ Team development
•
•
•
•
Team identity is defined not by the technology but by the service being provided: focus is
access not innovative technology
Team is interested in going beyond current applications, to the degree the applications
facilitate access to therapeutic interventions – ie, are highly useable, eg, bulletin boards;
cyber counseling
Team is interested in providing professional support to oncology health care providers
and volunteers who may be isolated
Team needs a name -- keep working
The meeting finished at 4:30.
In Conclusion
The meeting resulted in the following outcomes: increased knowledge for all
attending participants; increased perceived value of TWC as a partner to the Canadian
group with deliverables from TWC; enthusiasm among new members to receive training and
extend the work; greater group cohesion with enthusiasm for moving forward within a selfidentified mission and work plan; agreement among senior members to act as an advisory
or steering committee to the national work.
12
Next steps
Immediate next steps include identification of next cohort of trainees; formalizing of
Canadian supervision with TWC facilitator; hiring of a consultant to enact the environmental
scan/training documentation package and build documentation for Steering group.
A meeting of the Steering group will be needed next to formalize their role and
function, to review and comment on documents and work to date on Canadian website, and
based on budget/ funding mechanisms that are yet unknown, continue planning of next
demonstration groups.
13
APPENDIX 2
Meeting of NAPSCO Steering Committee
March 27, 2008 Toronto ON
Summary Notes
1) Review of the Rebalance Focus Group Update Document
Reviewed update document. Discussed modifying the wording to include peer-led facilitated
groups and using the term internet-based communication.
Decision: Creation of an overriding document outlining the goals and vision of the team.
2) Review of November Meeting Summary Notes
Reviewed November summary notes. Discussed the need for clarification on Professional
Practice/Ethical issues and standardized qualifications for prospective trainees.
Qualifications have been outlined elsewhere? (Masters training, group facilitation
experience, access to ongoing organizational support/supervision, and oncology
experience)
3) Clinician Training
Discussed next cohort of clinicians to be trained in OSGs. Possible to have 5 more trained
over next few months if space available.
Potential Trainees for Spring - Kim Watson (Ontario Clinician) Heather Lowe (Nova Scotia
Social Worker) Stephen Duval (Quebec Psychologist)
Karen will confirm Kim is available, and possibly locate one more ON clinician.
Other Suggested Trainees - Kate Collie (Alberta Online Therapist), Christine Coral, Sheila,
Scott, Carol Myer, Brenda Sabo (Nova Scotia Oncology Nursing)
Decision: Joanne will connect with TWC to start process for new trainees
4) Documentation
Discussed issue of trainee Elizabeth unaware of American Supervision group.
Discussed the creation of an orientation package for new clinicians (Include welcome letter
from Chair, letter of agreement, TWC schedule). Discussed new clinicians providing a letter
of organizational support.
Decision: Joanne follow-up with CPAC/TWC regarding orientation package
Decision: New clinicians are required to provide a letter of organizational support to
NAPSCO
5) Committee Name/Coordinator Role
Discussion of Committee name and need for National Coordinator
Decision: National Alliance for Psychosocial Oncology and Supportive Care Online
(NAPSCO)
Decision: Joanne to hire National Coordinator to create a team grant, build literature,
annotated bibliography, orientation package, document Clinician’s training/manual
Karen will pass the name of possible person to Joanne.
6) Evaluation Framework
Sue and Joanne presented an Evaluation Framework model created with consultation from
Waterloo. Logic model that is consistent and flexible across groups. Addresses key issues
of Positive Experience, Enhanced Access, Feasibility, Sustainability.
Decision: Committee endorsed Evaluation Framework as a working model.
14
Discussion on using common evaluation measures for the OSGs. Peer/professionally led
evaluation questions from Sue and Joanne are being generated.
Suggestion to include member with program evaluation experience on team.
Jill shared Rebalance Focus Visual Framework
Jill informed on Manitoba project – trained facilitators/responsible for 2 groups/study has not
been submitted to Ethics. Team suggested using Tom Hack, submit as addendum to
Michael’s study, utilize Joanne’s outcome measures.
Committee discussed length of sessions – different dosages appropriate for different OSG
mandates
7) Funding
CHIR Access Grant – Jill/Joanne named on grant - Online Work is research arm of
Rebalance
Joanne awaiting agreement between BCCA and CPAC
Team could generate proposal for CHIR NET grant
Decision: NAPSCO to advocate as team for funding with Joanne as representative
8) Partnership Presentation – Phillip Edwards
Presented an overview of Partnership Portals
Possible Canadian home for NAPSCO
9) Promotions – Kathy Thompson
Presented on promotion of peer led OSGs for prostate/ovarian/lung/breast
Posters were unsuccessful, more success with websites, postings on discussion boards,
Facebook
Successful partnership with Ovarian Cancer Canada – promoted on website
Make partnership with National site specific organizations – website, mail-outs, newsletters
Discussion on challenges in promoting support groups, nationally groups may be unwilling
to promote locally, future plan to implement distress tool as a referral mechanism, lack of
website stickiness
10) Screening Interview
Discussed screening interview used in BC OSG. Screening interview designed for
professionally led groups, but would be helpful for Kathy to review it for peer led. Discussion
on safety issues, confidentiality of members, problems with diagnosis confirmation in peer
groups.
Decision: Joanne to provide screening interview for Kathy to review
11) NAPSCO Deliverables
Health Canada Evaluation Report on pilots – June 1, (lessons learned/reports on two
groups)
BC Experience – End of April (procedures, organizational issues, ethics that inform National
implementation)
NAPSCO Position Paper
15
APPENDIX 3
NOTES ON PROFESSIONAL AND ORGANIZATIONAL ISSUES
Critical issues associated with the development and facilitation of professional support
groups:
PATIENT CONFIDENTIALITY, PRIVACY AND DATA SECURITY
Includes assurance of standards of confidentiality and privacy, just as with f2f work:
• For on-line, such would include facilitator education on practice and security
when using electronic communication (i.e., encryption, coding), so that all
possible means for assuring participant confidentiality is accessed (CPA).
• Appropriate information of encryption methods (as above) delivered by the
facilitator to (potential) participants (CCA).
• Includes explanations offered to participants on duration on how long any
session records- including individual correspondence- will be stored (CCA).
Includes full disclosure of limits/provisions of confidentiality/Release of information:
• Involves clear statements about: continuing care [FOIPPA]; harm risk of harm to
self or others; child abuse; court order.
Includes appropriate computer use and identity verification:
• For on-line, providing information to and agreements with participants re:
maximizing on-line security when communicating electronically (i.e., encryption,
software) (CPA).
• For on-line, procedures ensuring against participant impostor/identity theft, such
as use of encoding procedures (CPA; NPBCC), as well as through appropriate
identification of all involved, including facilitators (CCA).
• To ensure the participant is capable of appropriate usage of the computer
application involved in on-line support (CCA).
Includes information on privacy limitations:
• For on-line, information on limitations to privacy from IT hackers etc., and
explanations to participants of possible hazards associated with any unsecured
communication/discussion (i.e., monitoring of sessions by hackers) (CCA; CPA).
DEFINING SCOPE OF PRACTICE
Competence (including boundaries of competence):
•
•
For on-line, includes facilitators remaining up to date with research literature on
on-line support, and considering such when continuing to provide service (CPA).
Includes fundamental ethical care when addressing participant problems (i.e., not
attempting problem resolution on-line around an issue the facilitator is
inexperienced in through f2f) (CPA).
Formal training criteria for facilitators:
16
•
For BCCA facilitators, a completed Master’s degree and appropriate professional
credentials.
Supervision:
• Includes facilitator participation in an online Canadian supervision group (once
per month) and an American online supervision group (once per week).
Maximizing benefit/minimizing harm:
• Includes remaining up-to-date on research literature related to on-line (CPA).
• Includes support plans developed with as much congruence- as possible- with
needs of the individuals/groups served (CPA).
• Includes maintaining hard copies of on-line support interactions, and other online communications with participants (CPA).
• Includes the facilitator’s obtaining emergency contact information for each
participant, and discussion with each participant appropriate procedure in case of
an emergency, including the identification of local support and emergency
providers (i.e., participant’s GP; Hotline phone numbers; mental health centres
as appropriate) (CPA).
• Includes the facilitator’s appropriate access to messages left by participants
during the facilitators’ absence (i.e., between sessions; if the facilitator becomes
ill), as well as the facilitator’s clearly explaining to each participant how the
facilitator may be contacted between meetings (CCA; CPA).
• Includes provision of information- and appropriate discussion with participantson alternate communication in case of an IT failure (CCA; CPA).
• Includes appropriate referral for f2f service, if it becomes apparent to the
facilitator that the participant would benefit much more with f2f than with on-line
support, and the client is not receiving such f2f (CPA).
• Includes ongoing assurance of facilitators’ professional competence and the
protection of participants and others from any harm (APA).
• Includes the assurance that each participant understands the operation of and
purpose for the on-line support program (CCA).
Beneficial activities:
• Includes the facilitator’s providing participants with relevant contact information
for the facilitator (CPA).
• Includes facilitator’s refraining from using any tests or assessment techniques
on-line, in situations where such use jeopardizes the security and or copyright
restrictions of those techniques (CPA).
PATIENT SAFETY
Effective patient screening:
• Includes assurances that patient’s concerns are appropriate for online
participation.
Assessment:
• Includes sufficient intake information including the collection of full name, birth
date, address, and phone number information
Maintaining patient emergency contact information:
17
•
Includes the facilitator’s obtaining emergency contact information for each
participant, and discussing with each participant appropriate procedures in case
of an emergency, including the identification of local support and emergency
providers (i.e., participant’s GP; Hotline phone numbers; mental health centres
as appropriate) (CPA).
Knowledge of local professional support (in providing back-up care as warranted):
• As above (maintaining patient emergency contact information).
Risks/Benefits:
• Includes provision of information about the risks/benefits and a statement that
some concerns are most appropriately addressed in a face to face modality.
Informed consent:
• Includes the facilitator’s ensuring that inclusion of appropriate information
for/explanation to potential participants occurs prior to requesting informed
consent. Such information should include: information on risks of on-line (i.e.,
patient safety in physical isolation, lack of non-verbal communication with
facilitator and group members as potential for misunderstandings); information of
benefits of on-line (i.e., convenience, personal comfort, cost); information on
locally alternative service options (i.e., local f2f individual and group support);
information on privacy limitations using on-line (i.e., interception of private
information by a hacker; importance of coding)(CCA; CPA).
Freedom of consent:
• Assurance of f2f session for those potential participants for whom either capacity
to or freedom of consent might be challenged; consideration of feasibility of
offering on-line for such individuals (CPA).
Protection for vulnerable persons:
• If the on-line group support is offered to vulnerable persons (i.e., minors): f2f
session implemented to assure appropriate informed consent by appropriate
substitute decision maker (i.e., parent or guardian; Ministry case worker) (CPA).
• It is the responsibility of the facilitator to determine if a potential participant is a
minor, and thus requiring of parental/guardian consent (CCA).
RISK MANAGEMENT
Assurance that ethical principles are being followed:
• The professional responsibility of the facilitator in adhering to appropriate and
pertinent ethical codes is in no way diminished through the use of on-line support
when providing services to participants/clients (CCA). Also, the professional
responsibility of the facilitator includes appropriate conduct in relation to, and
adherence to, any extra points of ethical conduct specific to the provision of online support (CCA).
• It is the facilitator’s responsibility to review any pertinent ethical and legal codes
relevant to on-line support (NBCC).
• Assurance of consumer protection through appropriate web based links to
applicable certification bodies/licensure boards (NBCC).
18
•
•
•
Whenever possible, to assure that participants with disabilities have access to
on-line support, as appropriate (NBCC).
Whenever possible, to assure that participants from other cultural backgrounds
and or clients whose first language is not English, have appropriate access to online support (NBCC).
Assurance that participants have appropriate access to no cost or low cost web
based informational and instructional resources (NBCC).
Assurance that jurisdictional boundaries and guidelines are being followed:
• Includes insurances that the facilitator is licence in a manner appropriate to
her/his jurisdiction, in order to conduct on-line support.
Issues around whether the client resides in a different jurisdiction than the facilitator
(CPA):
• Includes assurances from relevant professional organizations on where the
responsibility for all identified professional and organizational issues identified
are based: within the province/territory from which the professional facilitator is
acting or where the client resides.
Assurance of coverage of legal issues:
• Assure facilitator adherence to relevant jurisdictional laws and regulations (CPA).
• Assure that all facilitators are covered for liability in the jurisdiction served (CPA).
Risk/benefit analysis:
• To assure that the support needs of each participant are assessed appropriately
(CPA).
Avoidance of conflict of interest:
• The assurance of appropriate standards or boundaries around facilitator
availability to clients (CPA).
• The assurance that the best interests of clients are not compromised through the
advantages to the facilitator around client participation in on-line support (CPA).
Support groups not therapy groups:
• The clear distinction that the group being offered is support-based not therapybased since therapy carries greater attention to safety concerns associated with
psychopathology.
19
APPENDIX 4
ACTIVITIES, PROCEDURES AND PROTOCOLS, LESSONS LEARNED FROM THE BC
EXPERIENCE
In the documentation below, we identify the procedures and protocols we developed that
address the ethical/risk management issues, and also the activities and role functions
needed for implementation, knowing that integrating new responsibilities and role functions
into an existing busy, clinical program brings challenges to capacity. While different
programs will require adaptations befitting their own context, we believe that much of what
was developed here, and the lessons learned, will be transferable to others wishing to set
up a program of professionally-led OSG’s.
Preparing the ground – identifying potential organizational barriers and supports;
initiating training in OSG facilitation
1) Consultation within the organization
Beyond piloting demonstration groups, we wanted to determine feasibility of developing
a sustainable program within the BC Cancer Agency. Thus an early activity was
consultation within the organization in order to determine potential barriers as well as
supports for setting up OSG’s. These consultations involved both the Program Leader
and the Principal Investigator.
• The Quality, Safety and Risk Management Coordinator was consulted to
ensure that OSG’s would be acceptable to the organization, and under what
conditions. The Coordinator advised us, in consultation with the Health Care
Protection Program (HCPP) that social workers/ counsellors who are
employees of the BC Cancer Agency would be covered under HCPP. Its
direct services are organized to assist its member health care agencies in the
management of risk through adequate risk financing, claims management
and the provision of risk management advice.
• The Privacy officer was consulted which resulted in a clear understanding of
the privacy legislation that we would need to be in compliance with. Over a
series of discussions, we were establish that it was acceptable to host OSG’s
through a US server providing that there is an absolute separation between
personal information and usernames. This guided the development of our
current enrolment procedure, by telephone, and the set up of chat rooms and
use of surveys to ensure no personal information entered the US.
• A senior Technology officer of the Agency was consulted several times over
the course of preparatory work. Initially, the question was ‘can OSG’s be
developed and supported within the scope of current or future organizational
resources?’. Later, consultation was to provide external advice on the value
of partnership with TWC for use of technology structures and platform. In
short, we were advised that currently there were no resources to do the work
locally; that in the future, the organization may have a portal system that
could be used for OSG’s; but that outsourcing was acceptable to the
organization and the costs associated with partnership were reasonable.
Recommendations/Lessons learned: These early consultations provided
reassurance that in the event of a patient complaint or lawsuit, the individual
counsellor would be protected. As well, the information that proved useful for 1)
developing the informed consent procedure and acceptance of the Research Ethics
20
Board to conducting research, 2) justification for the costs associated with
partnership with TWC, and continued association with TWC on matters of technology
and data security. We recommend that others conduct similar consultations within
their organization to ensure a foundation for a sustainable program.
However, we recommend that if at all possible, a technology person be assigned to
the project in order that there is an oversight function and ability to communicate at a
design level about needs. We were unsuccessful in having access to such a person
over the duration, and as a result, experienced later challenges due to lack of
knowledge on our part.
2) Counsellor training and qualifications
We had determined, as an outcome of the first workshop, to invest in specific training for
the OSG facilitators. The skills of face-to-face group facilitation require considerable
translation, and new skills need to be learned and practised, in order to deliver high
quality support groups in a text-based online environment. Counsellors eligible for
training need to be skilled in group support and knowledgeable about psychosocial
oncology issues. We determined that the following qualifications were required to
conduct online support groups:
•
•
•
•
•
•
Graduation from an accredited Masters program in Social Work of a Masters
program deemed to be equivalent by the Agency (i.e., Master of Counselling
Psychology, Master of Clinical Psychology).
Registration with the Board of Registration for Social Workers of BC or the British
Columbia Association of Clinical Counsellors.
Minimum of two (2) years experience in clinical social work/ counselling in an
interdisciplinary setting including experience in individual, marital and family
counselling, group work.
Minimum of two (2) years experience in group work.
Employed as a Social Worker/ Clinical Counsellor with the BC Cancer Agency,
Patient and Family Counselling
Comfort and familiarity with computer use
Supervision and training through TWC was also required. Training involved participating in a
support group with a trained facilitator for ten weeks, and attending weekly online
supervision with the TWC team of facilitators where they would discuss concerns, ask
questions and increase familiarity with working in the synchronous on-line environment. Skill
development included learning how to convey emotion with text, how to make process
comments that keep the group moving smoothly, how to challenge inappropriate behaviour,
and when to let the group members support one another and when to be more active.
A monthly online Canadian supervision group has been established which was initially peer
based. However the facilitators saw value in continuing to access the expertise of TWC
facilitators, and now a trained supervisor and facilitator with TWC community is providing
supervision and ongoing skill development.
Recommendations/Lessons learned: Our experience facilitating 2 pilot groups, and
consultation with others in the field, have convinced us of the value of TWC training and
supervision model: for high quality OSG’s, facilitators need to be well trained and have
21
access to good supervision. For additional information, please see our draft paper ‘the
clinicians learning experience’.
Setting up the Program – identifying roles and tasks
Once the groundwork had been completed we began preparing to implement 2
demonstration groups. The BC team needed to identify tasks/functions necessary for
offering online support groups, and where possible, to integrate those tasks into already
existing functions and roles. Our objective was to concurrently assess the feasibility of
adding an online program to current services, and to gauge the resources needed for doing
so. The following represent the primary roles and tasks required:
1. Leadership role (filled by Program and Research Leaders)
•
•
•
•
•
Design and submit proposal, ethics application
Be available for meetings re: the research, development of the groups
Assist with promotional work – eg, contact professionals in community
Develop risk management protocols - eg storage of group transcripts, liability
Be available for consultation by facilitator/ coordinator
2. Facilitator role (filled by 2 counselors)
• Develop content of groups/ group eligibility requirements in consultation with
leads
• Assist in editing screening interview
• Initial screening interview to determine participant eligibility; any flags to be
followed up by Leads
• Provide coordinator with content for the home page
• Write initial welcome email to the participants, including group norms, themes,
etc ; give this to research coordinator to send out
• Resolve any IT issues before starting the group
• Assist in developing promotional materials for the groups, promoting the groups
with colleagues
• Set date and time for group start
• Run support groups
• Complete facilitator experience questionnaire after each group session and send
to coordinator
• Provide information to Research Lead to help evaluate the OSG
3. Administrative assistant (filled by Research Coordinator)
• Assist with ethics and proposal application
• Set up home page (content provided by the facilitators, investigator)
• Be the contact person for the study, answer queries and questions from potential
participants (with program secretary who was given an information sheet about
demo groups)
• Send out emails to group members from study email address
• Edit screening interview to be applicable to each group
• Collect faxed or mailed informed consent forms
22
•
•
•
•
•
•
•
•
•
Send out educational materials (if applicable) to group participants prior to the
group start
Determine community supports in each participant’s home community
Send out pre-group measures
Send out welcoming emails from each facilitator
Send out any follow up email re: group absences
Send out emails before each group reminding group members of the next week’s
theme/ topic
Send out facilitator evaluation questions after each group session
Send out post group measures
Be available to group members to answer questions, tell about absences etc
Recommendations/ Lessons Learned: For the demonstration groups, clinical back fill was
available once the group started, however, this clinical backfill did not cover the initial
preparation for a group. The promotion, planning, screening and training for these kinds of
groups was labour intensive, and front loaded (e.g., in the preparatory phase). Clinical back
up is recommended for at least one half day per week for the month prior to the groups. To
meet some of the administrative demands of this preparatory phase, a research coordinator
was funded for one day a week. At some future point, this administrative support and
project coordination role could be provided nationally.
Setting up the Program – promotion and communication
Promotion is both challenging and time consuming for online groups. Part of the challenge in
promoting any new kind of group in a health care setting is due to the overload of
information that patients receive, and that health care professionals need to convey. This
was made more challenging by changes in the nursing practice at one cancer centre within
the catchment area that resulted in less one on one time for nurses with patients. We also
wondered if the online nature of the group made it more challenging in that many have a
perception that the elderly are not comfortable or do not have the computer skills to
participate in such a group. It is also a new medium for many for receiving support.
“Word of mouth” referrals in the past have been most effective, and so we focused our
energies on promoting these groups to health care professionals, both in the Cancer Centre
and in the community.
•
Each facilitator sent out promotional flyers to the Patient and Family Counselling
(PFC) counselling staff (BC Cancer Agency, Fraser Valley and Vancouver Centres)
within the Hope to Whistler catchement area.
•
Promotional posters were displayed on the PFC department and BC Cancer Agency
notice boards.
•
Flyers were sent out to community oncology social workers within the Whistler to
Hope catchement area.
•
Flyers were sent to nurse educators within the Vancouver and Fraser Valley Centres.
•
Announcements were made at the Cancer Agency Education Rounds (Radiation
Therapy and Oncology Education Rounds).
23
•
Facilitators met with the Canadian Cancer Society Coordinator, and information
about both groups was added to the resource information that callers can access
when they call the Canadian Cancer Information Phone line.
•
Flyers were sent to Inspire Health, a community based cancer program.
In addition to this general mail out, there was targeted promotion for each group.
Prostate Group:
• Facilitator contacted oncologists and surgeons who specialize in the treatment of
prostate cancer, both in the community and in the Cancer Agency.
• Facilitator informed local prostate community groups about the group.
• The prostate informational flyer was posted on a local prostate cancer information
website.
Caregiver Group:
• Facilitator contacted the Caregivers’ Association of British Columbia
• Email fan out and phone follow up with palliative social workers within catchement
area
• Promotional flyer sent to community home support contact person
• Email fan out to hospices in the catchement area.
Once the facilitators established a distribution list of contacts for promotion, they continued
to send out email reminders at least once a month leading up to the group start.
Recommendation/ Lessons Learned: Once these groups are established as part of core
program practice promotion should be easier. Upcoming group information can be added to
monthly calendars by secretaries and posters for upcoming groups can be quickly updated
and mailed out to the established distribution list. It is also expected that there will be more
word of mouth referrals from patients and caregivers who have participated in the groups.
Initially, however, promotion needs to be built into the time estimates for start up of these
kinds of groups.
4. Handling enquiries
Interested patients and caregivers were directed to call one of two secretaries to find out
general information about the groups. The secretaries were given a study description and an
instruction sheet around information to obtain during the initial phone call. This initial screen
determined basic eligibility requirements and interest in the group (eg. Did caller have a
computer, were they in the Whistler to Hope catchement area, did they have a registry
number, were they seeking support).
Facilitators gave potential participants more information about the group, and screened
participants for suitability. Following that, the research coordinator went over the consent
form, the process for completing study measures, and allowed for a practice session within
the chat room.
Recommendations/ Lessons Learned: It may be more efficient at some point in the future to
have one point person nationally to field enquires about online support groups available, and
24
forward referrals to facilitators for follow up. Promotion beyond the health care setting to
providers is also recommended.
Setting up the Program – identifying target groups and scope of program
Some of the initial discussions of the planning team was regarding the scope of practice for
these online support groups. This included decisions around the level of support that would
be offered in these groups and the geographical catchement area for recruitment. The intent
around these decisions was to increase transparency around practice, limit risk and ensure
ethical practice.
The first decision made was to define the online groups as support groups not
psychotherapeutic groups. In this we followed in the footsteps of The Virtual Wellness
Community (TVWC). In TVWC there is strong emphasis placed on the point that online
groups are support groups not therapy groups.
Another decision was to keep these groups provincially based. In Canada, each
professional body has its own provincial regulatory body. This makes the prospect of cross
jurisdictional groups challenging. For now, the BC Cancer Agency’s Quality, Safety and Risk
Management Coordinator has recommended that for the purposes of liability reduction,
groups be provincially based. The Coordinator recommends that interprovincial agreements
be developed between provinces prior to extending the provincial boundaries for
recruitment. HCCP has offered to assist with a risk management assessment to identify
risks, eg. who would be responsible if an incident occurred – the province in which the
facilitator practices and/or the national group?.
Recommendations/ Lessons Learned: It is important to make decisions early on in the
planning process that clearly define the scope of practice to ensure safety for the
participants, limit risk, and ensure ethical practice.
Preparing the patient – ensuring safe and ethical practise
When offering an online support group, patient education and informed consent need to go
hand in hand. For the purposes of the Moving Forward study and the demonstration
groups, screening for suitability and safety was an important step. Screening included
patient consent to confirm diagnosis and registry status with the BC Cancer Agency. Basic
computer literacy was assessed, as was the ability to converse using the English language.
Screening for risk included:
•
•
•
screening for alcohol misuse
suicidal ideation, past or present
mental health issues which would affect a patient’s ability to participate in a group
process
Group participants were also required to commit to the group process, and adhere to group
norms.
These included:
25
•
•
•
•
•
a commitment to attend every group
arrive on time and stay for the entire session,
maintain group’s common and shared focus
treat each other with respect
maintain confidentiality
For the caregiver group, caregivers needed to have their identity confirmed and patient
diagnosis verified, either through a referral from BC Cancer Agency or affiliated health care
provider, or a letter from their family doctor, or through the patient giving informed consent to
allow us to verify his or her patient status through our CAIS system (Cancer Information and
Scheduling System). For the prostate group, patients needed to give their BC Cancer
Agency registry number for verification of cancer diagnosis.
Recommendations/ Lessons Learned: It is important to both educate and screen potential
participants for “goodness of fit” for the group, and refer to other supports if necessary.
o
Patient Confidentiality, Privacy and Data Security
Confidentiality and privacy was another important issue in offering these groups. This
included discussing the limits of confidentiality as one would in a face to face group. Group
participants were informed of the exceptions including:
1. When it is required by Community Health Care Agencies in accordance with FOIPPA –
will need to spell out – Freedom of Information and Protection of Privacy Act – BC legislation
for the purposes of continuing care.
2. If a counselor believes that there may be a significant risk of harm to self or others.
3. If the information is required by law to be disclosed (e.g., child in need of protection, court
order, subpoena).
In the screening interview, participants were advised to log into the chat room using a
private computer, not one in a public place like a library or internet café, to log out at the end
of the chat session, to inform facilitator if leaving a session prior to the end, and to keep their
user name and password secure (attach patient education sheet in appendix). For the
Moving Forward study transcripts were accessible to online group members and study
investigators only. Transcripts were stored at DLC, but no identifying information was stored
with them other than the patients’ first name. The Web page and host page was not
accessible by Internet search engine.
These safeguards were reviewed with both the BC Provincial Health Services Authority
FOIPPA Director to ensure compliance, and also gained ethics approval.
For the demonstration groups, transcripts were stored with the BC Cancer Agency
electronically in a secure, restricted access file.
Recommendations/ Lessons Learned: As with any group, it is important to ensure privacy
and confidentiality, and to let participants know the limits of confidentiality. The electronic
presence of a session transcript heightens privacy concerns. Safeguards to ensure
confidential storage and restricted access to these transcripts are necessary.
o
Emergency Contact Information
26
Patients that were ineligible for the online environment were advised of options for support
in their home communities. Maheu (2003) emphasizes the importance of having emergency
back-up supports in place before offering online support. This includes family and friend
contact information, family doctor contact information, and information about resources and
supports in the home community.
For the purposes of the demonstration groups, we limited the catchment area to the lower
mainland of British Columbia (Whistler to Hope). This catchment area includes communities
that are more remote/ rural to the larger mainland cities. We asked patients and/or
caregivers to provide us with the names of family doctor, and a friend or family member
emergency contact. The services within this catchment were better known by the facilitators,
and thus referral to other supports much easier if need be.
Recommendations/ Lessons Learned: It is important to know both the back up face to face
supports available in the community, and to obtain emergency contact information for each
group participant.
27
APPENDIX 5
Online Support Group Protocol
Step 1:
Promotional Activities
• Handouts and poster materials
• http://canada.thewellnesscommunity.org
• Agency Website
• Patient/Caregiver community groups
• Community Oncology Network
• PFC word of mouth
Step 2:
1st Contact - PFC Secretary/Facilitator
• Inquire where caller heard about OSG
• Check for computer familiarity
• Confirm patient identification
information
• Inform about OSG program and
current groups
• If eligible refer to OSG Facilitator for
suitability assessment
• Complete PFC tracking sheet
2nd Contact Suitability Assessment - OSG Facilitator
• Provide further information about specific group to confirm eligibility
and suitability (ability to attend sessions, congruence of
group/individual goals, process and outcomes)
• Conduct brief psychiatric screen with eligible participant to
determine safety
• If suitable refer to Research Coordinator
Step 3:
Study Enrolment – Research Coordinator
• Conduct telephone enrolment interview to educate about
confidentiality and gain informed consent
• Correspond with TWC/DLC and participant to assign study number,
username and password
• Ensure online consent form and questionnaires are submitted
• Ensure participant can access chat platform
• Mail home-study materials if needed
• Send out Welcome Email (group norms, counselor intro)
Step 4:
Weekly Contact – Research Coordinator
• Send weekly emails to remind of session topics
• Maintain alliance
Step 5:
Assessment – Research Coordinator
• Email reminders for post-intervention assessment at 8 weeks and 3
month follow up
28
APPENDIX 6
Suitability Assessment Script
1. Orientation
Begin by telling more about the group – for Caregivers’ group talk about NuCare
material, CD and for Prostate Group talk more about the health psychology focus
• Elicit questions/feedback to determine whether it feels like there is a good fit for the
person – develop alliance and interest in what the group has to offer the person
Include Qs:
“Where are you with respect to treatment for your cancer? (Caregiver- where is your loved
one at?)”
“What is your health status now? (your loved one’s health status?)”
Discuss limits to confidentiality.
“Your health care information belongs to you and is held in confidence by the BC Cancer
Agency except in the following circumstances:
1. When it is required by Community Health Care Agencies in accordance with
FOIPPA for the purposes of continuing care.
2. If a counselor believes that there may be a significant risk of harm to you or
others.
3. If the information is required by law to be disclosed (e.g., child in need of
protection, court order, subpoena)”
• Let potential group member know that this is a demonstration group, and thus part of
a research project. There will be questionnaires to fill out on three occasions- these
can be completed online (will take about 20-30 minutes each time).
2. Assess General Motivation and Interest
What are your hopes/ expectations for this group?
How interested are you in doing this online group?
1 (a little)
2
3
4
5 (extremely)
Do you feel that you can commit to an 8 week group at this time? Y
N
Is the time a barrier for your participation? Y
N
If so, what time would work better? _____________________
Do you have past experience with support groups? Y
How helpful, if at all, was that experience? Why?
N
3. Screen for Mental Health
What is your mood like these days?
0
1
2
3
4
5
worst
best ever
How was your mood generally before cancer diagnosis?
0
1
2
3
4
5
29
Have you ever been diagnosed with a mental condition (depression, psychosis)? Y
N
• If yes- Hospitalization? Length of stay?
•
If under current treatment -- permission to contact therapist?
•
Note: we will need get release of information form signed to talk to current therapist
Y
N
Have you ever thought about taking your own life?
0
1
2
3
4
5
passive thought
serious action plan
Have you ever harmed yourself on purpose or made attempts to? Y
N
• If suicidal at present: Do you have a plan? Do you have access to means? Have you
told anyone about this?
• note about confidentiality if there is an active plan, we must let family doctor know,
emergency family contact know, create a safety plan (including going to hospital if
necessary)
4. Screen for Substance use
How much alcohol? (amount consumed per day) ________________
Are you taking any prescription medication for your nerves? Y
N
Name:______________________________
Do you use non prescription medication? (incl. drug use) Y
N
Name and amount per day:______________________________
____________________________________________________
Have you ever thought you should cut down or quit? Y
N
Have others ever tried to persuade you to cut down or quit? Y
N
5. Assess possible Resources
Stress level right now?
0
1
2
3
lowest ever
4
5
0
highest ever
Pre-Cancer Stress level?
1
2
3
4
5
How do you manage your stress? What helps?______________________________
___________________________________________________________________
How is your sleep these days? # of hours per night? Difficulty getting or staying asleep?
___________________________________________________________________
30
What did you used to enjoy doing before cancer diagnosis? Loved one’s cancer diagnosis?
(resources, major interests, passions, occupations)
Are you able to still do these things now?
Who are your supports?
Who lives with you?
What helps you these days?
For Caregivers’ Group:
In Caregiver group, would you be okay being in a group where some caregivers’ loved ones
are dying? Y N
If you as a caregiver are interested, I will need to collect some information to register you (fill
out 3rd party registration form now)
6. Conclude Discussion
Do you have any question for me about the online support group?
Next step
I will give your name and contact information to our program assistant, Jennifer Macdonald
and she will contact you to get your informed consent to participate and to give you a
chance to practice logging into the chat room.
31
APPENDIX 7
Study Enrolment Interview Script
Study Overview
Thank you for your interest. Are there any questions before I begin? This is a research study
being held by the BC Cancer Agency with funding from the Public Health Agency of
Canada. I am the research coordinator for the study, and I will be your contact person
throughout the course of the study. You can contact me by phone or email if you have any
questions or comments about the study. I have some questions that I need to ask you in
order to enrol you in this study. I also want to spend some time going over the Information
and Consent form, which is located on the website. Have you read this form?
Personal Information
To begin, I need to collect some personal information from you.
•
Name
•
Address
•
Age
•
Phone number
•
Email
•
Highest level of education
•
Occupation
•
Are you currently working
•
Group interested in
•
Availability of days or evenings
•
How did you hear about this study
•
Are you able to schedule uninterrupted access to the internet and computer
Support Group Questions
• Have you ever participated in a face to face cancer support group
•
Was there a leader
•
What organization or hospital sponsored the group
•
Approximately how many times did you attend
•
How helpful did you find the group:
If so was it led by a trained counselor?
32
Very___ Somewhat____unhelpful____harmful___
•
Why did you stop attending the group
•
Have you ever participated in an online support group
•
What attracts you about an online support group
•
Why are you seeking an online group?
1.
2.
3.
4.
5.
6.
•
there are no cancer support groups where I live
an online support group is more convenient
an online support offers more anonymity/privacy
I am more comfortable writing than talking about issues or problems
I am too tired to travel to a face to face support group
I am unable to leave because of caregiving responsibilities
How important are each of the following reasons for seeking online support?
Very important (1), somewhat important (2), not important (3)
1. get relief from feelings that are troubling me___
2. place where I can express my feelings___
3. get information about cancer___
4. be with other people who understand me___
5. seek increased meaning in life___
6. learn how others cope with their problems___
7. learn how I can better cope with cancer___
8. get away from problems___
9. make changes in my life that I think are important___
10. receive support from others___
11. feel less alone or isolated___
12. make friends___
•
Do you have any reservations about joining an online group
Computer Information
As this is an online study, I just want to get a sense of how comfortable you are with using
the computer. These questions deal with your knowledge and use of computers.
•
Can you give me a rating from 1 to 3 as how comfortable you are with using the
computer and the internet? (1 is most comfortable, 3 is not at all comfortable)
•
Do you use websites to search for health information?
•
Do you use email?
•
What kind of internet access are you using?
•
Do you have a relatively new/fast computer system?
Participant Information and Consent Form
33
We need to go over the information and consent form. This document is located on the
study website, and if you open it we can look at it together. I will give you a moment to read
each section and then we can discuss it. If you have any questions, please do not hesitate
to ask them.
Looking on this first page here, are there any questions?
Background
I just need to be aware that participation in this study is voluntary, and you can withdraw at
any time. You will still receive your usual care. Are there any questions?
Study Purpose and Design
The purpose of this study is to pilot test an online support program for cancer patients and
caregivers.
If you agree to take part in this study, you will be asked to fill out a series of questionnaires
online. These will need to be filled out 3 times, once at the beginning, after the 8 week group
intervention, and after three months. You will access these forms online and we will send
you reminders by email.
At the end of this interview, you will choose a password. I will email you when it has been
activated and you can then login to the website to complete your questionnaires and
become familiar with the online chat. Before you begin answering the questions, you will be
asked to review this consent form. Please re-read the consent form again and choose the “I
Accept” option if you are agreeing to be part of the study.
Caregiver’s group – you will be mailed out a home package with a workbook and
instructional CD. Each week you will read a chapter and discuss the material in your groups.
Do you have any questions about the procedure?
Benefits
I want to discuss the potential benefits of the study with you. Benefits to you can include
learning new coping skills which enhance wellbeing and quality of life, as well as increased
social support.
Risks
I want to discuss the potential risks of the study with you. There are no known medical risks
to participating. Involvement in support groups may increase distress for a small number of
participants. If you experience increased distress over the course of the study, you may
request to speak with a counselor individually, and she will help you to identify an
appropriate mental health professional in your area.
There may be risks associated with the electronic transfer of information. These include
breach of confidentiality from third parties viewing the electronic information through
interception or misdirection of network transmissions. In addition, information could be
directly viewed on a participant’s computer or from printed copies of the session transcripts.
We are taking measures to maintain confidentiality including
• Security features such as study ID numbers, file encryption and password
protection.
• Questionnaire data will be stored offsite in the US. This data will be associated with
a study number only, and will not include your name or other identifying
information.
34
•
Transcripts of the online groups will be stored in a secure site in the US and at the
BC Cancer Agency. This data will be associated with a first name only, and will not
include identifying information.
• Participants will be made aware of the need for physical privacy during online
sessions and the need to protect printed copies of session transcripts. You will
need to log off at the end of each session.
These measures safeguard the privacy of participants to the best of our ability. However, we
cannot guarantee absolute privacy of electronic data, and the confidentiality risks involved in
this study are the same as with other online exchanges. Are there any questions about the
risks and measures of confidentiality on the online groups?
Remuneration/Compensation
There is no payment for participating, nor is there any cost to you.
Confidentiality
As a participant in this study your confidentiality will be respected. The following measures
will be taken to ensure that your privacy is maintained:
• Information that discloses your identity will not be released or published.
• Your identity will not be used in any reports about the study.
• You will be identified by a study code number only.
• All identifying and medical treatment data will be stored within Canada.
• All information associated with this study will be kept behind locked doors, in a
locked filing cabinet or in computer files secured by a password.
Do you have any questions regarding confidentiality?
Subject Consent Form
Please keep a copy of this form for your own records.
Password
Please choose a password that you will remember_______________________________
I will send an email when it has activated for you to login to complete your questionnaires.
Interview Close
Thank you for your time today. If you have any questions or comments, please do not
hesitate to contact me. Have a good day.
35
APPENDIX 8
Participant Information & Consent Form
BC Cancer Agency Online Support and Discussion Groups
Principal Investigator:
Joanne Stephen, Ph.D.
Research and Clinical Practitioner
Provincial Rehabilitation Network
Fraser Valley Cancer Centre
Telephone 604-930-4055 ex. 4505
Co-Investigator:
Gina Mackenzie
Regional Practice Leader
Vancouver Cancer Centre
Telephone 604-877-6000 ex. 2802
Sponsor
Funding for this study has been provided by the Public Health Agency of Canada
Emergency Contact Number: (24 hours/7 days a week)
For emergencies only: Call the centre nearest you and ask for Patient and Family
Counseling Services
Vancouver Centre
Fraser Valley Centre
604-877-6000
604-930-4000
Non-Emergency contact numbers are noted at the end of this document under the
section heading “Contact”
Background
You are invited to participate in this research project because cancer brings many
challenges. We are doing this study as part of our efforts to help those who may be
experiencing cancer related distress.
If you are taking part in this study, you will join a professionally led support and discussion
group that is delivered through the Internet.
Taking part in this project is voluntary. You can decide not to participate or to withdraw from
this project at any time.
Purpose
36
This project is a demonstration study. Before proceeding to a full scale program, a
demonstration study is often carried out first to test the design of a study and its
acceptability to participants. The design of a study is how the program is implemented, how
the data will be collected, whether the data can provide useful information and whether it will
be practical to proceed to a larger program.
Who can Participate?
You can participate in this study if:
•
•
•
•
•
•
•
•
•
You fully understand the project and give your informed consent to participate
as demonstrated by signing this consent form
You live in BC
You are a BC Cancer Agency patient or a family member caring for a person
diagnosed with cancer who has received treatment at the BC Cancer Agency
You are familiar with computer usage and have access to the Internet in a
private area where you will feel comfortable entering personal information
You have the ability to read and write in English
You can commit to the weekly time requirement
You do not have a history of serious psychiatric disorder
You see yourself as having at least moderate distress because of your
cancer experience
You are not in the advanced stage of a cancer diagnosis
You cannot participate if:
•
Any of the points above do not apply to you.
Study Procedures
If you agree to take part in this study, you will be asked to fill out a series of questionnaires
online. The forms will be completed at the following times:
1. Prior to enrollment into the online support group
2. At the end of the online support group (8 weeks from start)
You will be prompted by email and sent a link and password to access the forms. It is
important that you complete each set of forms on time. Each time you complete the forms it
will take approximately 30 minutes.
After you have completed the first set of forms you will be enrolled in the online support
group. You will participate in a 1½ hour online group with a BC Cancer Agency counselor,
once a week for 8 weeks.
37
You will be telephoned by the Research Coordinator and provided with instructions for
logging onto the online group.
After the end of the study, you may also be contacted for a follow up interview.
If you have any questions about the research procedures, please feel free to contact the
Principal Investigator, Dr. Joanne Stephen. Her telephone number is listed on the first page
of this consent form.
Benefits
The potential benefits of the study include the investigators learning better how to conduct
this type of study. Individual subjects may learn new coping skills and experience enhanced
mood and well being and feeling supported by peers but we cannot be sure this will happen.
Risks
There are no known medical risks to participating in this study. It may be distressful to
participate in the support groups. If you experience increased distress over the course of the
study, you may request to speak with a counselor individually, and she will help you to
identify an appropriate mental health professional in your area.
In the online support groups, there may be risks associated with the electronic transfer of
information. As with any online interaction, it is possible that third parties could view the
electronic information through interception or misdirection of network transmissions. In
addition, information could be directly viewed on a participant’s computer or from printed
copies of the session transcripts. However, no personal information could be linked to
potential viewings. The following measures will be taken to ensure that confidentiality in the
online support groups is maintained:
•
Your privacy on the online support groups will be protected through the utilization
of security features that include the use of study ID numbers, first names only, file
encryption and password protection.
•
Questionnaire data will be stored offsite in the US. These data which leave Canada
will be identified with a first name only. They will be stored in a secure site that
supports other medical internet communication applications.
•
Electronics transcripts of the online groups will be stored in a secure site in the US
and within the BC Cancer Agency. This data will be associated with a first name
only, and will not include identifying information.
•
Participants will be made aware of the need for physical privacy during online
sessions and the need to protect printed copies of session transcripts.
These measures safeguard the privacy of participants to the best of our ability. However, we
cannot guarantee absolute privacy of electronic data, and the confidentiality risks involved in
this study are the same as with other online exchanges.
Confidentiality
38
As a participant in this study your confidentiality will be respected. The following measures
will be taken:
•
No information that discloses your identity will be released or published without
your specific consent.
•
Your identity will not be used in any reports about the study.
•
In records that leave this centre you will be identified by a study code number only.
Your birth date will also be provided if requested by the sponsor or responsible
regulatory agency.
•
All identifying and medical treatment data will be stored within Canada.
•
All information associated with this study will be kept behind locked doors, in a
locked filing cabinet or in computer files secured by a password.
In the presence of the principal research investigator or her designate, research records and
medical records identifying you may be inspected by Health Canada, the US Food and Drug
Administration and UBC BCCA Research Ethics Board, for the purpose of monitoring the
research. However, no records that identify you will be allowed to leave the centre. These
organizations have policies of strict confidentiality and the individuals inspecting your
records must sign a BC Cancer Agency confidentiality form (the form is not applicable to
Health Canada or US Food and Drug Administration officials, who have the legal right to
inspect health records and are bound to confidentiality by specific laws).
Reports concerning your progress and photocopies of certain portions or your medical
record, identified by a study code number only, may also be sent to:
•
•
UBC BCCA Research Ethics Board, the research ethics committee that oversees
the ethical conduct of this study in your centre
Health Canada
Your rights to privacy are protected and guaranteed by federal and provincial laws that
require safeguards to insure that your privacy is respected and also give you the right of
access to the information about you that has been provided to the sponsor and, if need be,
an opportunity to correct any errors in this information. Further details about these laws are
available on request to the Principal Investigator or the UBC BCCA Research Ethics Board.
Compensation
You will not be paid for participating in this study. As this is an at home intervention, there
are no costs to you for participating, and no re-imbursement will be provided.
You do not waive any of your legal rights for compensation by signing this form.
Remuneration
39
The sponsors of this study may reimburse the BC Cancer Agency for all or part of the costs
of conducting this study. However, the investigators conducting this study will not receive
any personal payments for conducting this study. In addition, neither the BC Cancer Agency
nor any of the investigators or staff conducting this study will receive any direct financial
benefit from conducting this study.
Contact
If you have any questions about this project, you can ask the principal research investigator
Dr. Joanne Stephen - Telephone (604) 930-4055 ex. 4505
If you have any concerns about your treatment or rights as a research subject you may
contact the Research Subject Information Line at the UBC Office of Research Services at
the University of British Columbia at (604)-822-8598.
Please keep this letter for your own records. Thank you for your time!
40
Subject Consent
•
I understand that participation in this study is entirely voluntary.
•
I may choose not to participate in this study and I may withdraw from the study at
anytime.
•
I understand that I may ask questions about this study in the future.
•
I understand that I may be contacted after the study.
•
I have received a signed copy of this consent form including all attachments for my
own records.
•
I consent to participate in the online support group research study.
Participant’s signature
Printed name
Date
Witness’ signature
Printed name
Date
41