1. health and fitness
2. disease
3. heart disease

How to Hold an Advocacy Day
A Manual for Volunteers and Staff of
Osteoporosis Canada
February, 2006
February 2006
TABLE OF CONTENTS
General Introduction…3
Osteoporosis Canada: Our Approach to Advocacy
Goals of Advocacy Initiatives
Benefits of Advocacy Initiatives to People Living with Osteoporosis
Benefits of Advocacy Initiatives to Divisions/Chapters
Introduction to Osteoporosis Canada
Key Messages
Introduction to the Advocacy Manual…8
What is Advocacy?
What to Advocate For…Choosing the Issues
What is an Advocacy Event?
Selecting a Date for Your Advocacy Event
Involving the Osteoporosis Community…14
Gathering Participants for the Advocacy Event
Contacting Your Provincial Government…22
Writing a Letter to the Representative
Follow-up Calls
Scheduling Appointments
Event Logistics…26
Accommodation
Site Visit
Transportation
The Coordination Centre
Creating Presentation and Training Packages
Tips for Visiting Your Elected Representative
Tips on Conducting a Successful Meeting
Training…35
Training Goals
Tips on Training
Wrap Up
Thank You Letters
Evaluation of the Training Session and of the Advocacy Day
This is Just the Beginning…43
Beyond the Parliament Buildings
Organizing Meetings at the Community Level
Involving Decision-Makers at Osteoporosis Canada Events
Attending Pre-Budget Hearings
Attending Legislative Committee Meetings
Stakeholders Lockup
2
February 2006
Awareness Event
Letters and Letter Campaigns
Petitions
Ongoing Contact
Appendices…47
3
February 2006
How to Hold an Advocacy Day
“Be the change you want to see in the world.”
Mahatma Gandhi
General Introduction
Over the past years, the need for, and the duty of, voluntary organizations to participate
in advocacy has grown. Voluntary organizations have a responsibility to provide the
government with crucial feedback to its current policies, to identify growing areas of
concern and, most importantly, to offer feasible solutions. Voluntary organizations have
a unique perspective that allows us to see first-hand the results that decisions bring. As
we have a vested interest in these results, we must actively participate in the process by
which they become effective. Osteoporosis Canada can help influence and change
local, provincial and national government policies through its advocacy efforts.
Osteoporosis Canada’s commitment to advocacy has given rise to a new voice for
people living with osteoporosis in Canada. In February 2004 the national Board of
Directors approved the establishment of the Canadian Osteoporosis Patient Network
(COPN). COPN is a network of patients created to:
• Provide opportunities for people with osteoporosis to share experiences and
strategies
• Deliver patient insights wherever and whenever necessary
• Provide the patient perspective in research
• Influence decision-makers in healthcare policy
Since its inception, COPN has launched its own section on the Osteoporosis Canada
web site and publishes its e-newsletter COPING. COPN supporters are effective
advocates for people with osteoporosis, playing a major role in bringing to fruition the
Ontario Osteoporosis Strategy, and participate in many conferences and committees
having to do with research and healthcare policy.
Osteoporosis Canada and COPN invite Chapters across the country to join them in
promoting changes in healthcare policy to benefit all people living with osteoporosis.
Osteoporosis Canada: Our Approach to Advocacy
The Osteoporosis Canada approach to advocacy is based on six principles:
1. Cooperation. In order for people living with osteoporosis and their families to
receive better and more extensive services, and for more government money to
be allocated to research, a cooperative relationship must be formed with the
provincial government. This will enable us to work together without duplicating
efforts.
2. Consensus. In order to move forward, change must happen one step at a time.
By addressing two or three issues at one time rather than hundreds, we give the
provincial government a starting point from which to work. It is for this reason that
Osteoporosis Canada looks for consensus amongst a broad range of
stakeholders on the issues it will present.
4
February 2006
3. Continuing Education. It is the responsibility of Osteoporosis Canada to ensure
that decision-makers and their staff remain knowledgeable of the issues facing
the osteoporosis community, especially as new public officials are elected and
they bring their own political staff on board.
4. Recognition of Government’s Needs. Advocacy efforts can and will be more
productive if the needs, goals and timelines of the provincial government are
taken into consideration.
5. Providing Options and Solutions. To effect change, Osteoporosis Canada
needs to contribute to the solutions.
6. Staying at the Table. Advocacy is a process, and change will not happen
overnight. It is important to keep educating and delivering our messages.
Goals of Advocacy Initiatives
•
•
•
•
To raise awareness of osteoporosis and Osteoporosis Canada with elected
officials, their political staff and public servants at the provincial government
To influence and guide public policy by educating the provincial government
about issues facing people living with osteoporosis and their caregivers, and to
present feasible, viable solutions to these issues
To develop a relationship with the provincial government that will allow for future
collaboration and involvement
To provide a united voice for the community of people living with osteoporosis
Benefits of Advocacy Initiatives to People Living with Osteoporosis
•
•
The opportunity to help raise awareness of the disease and to initiate change
towards improved care and services
To benefit from any changes to healthcare policy and services that may result
from advocacy initiatives
Benefits of Advocacy Initiatives to Divisions/Chapters
•
•
•
•
•
An increase in awareness of Osteoporosis Canada and its programs
To help improve the quality of patient care
An opportunity to involve people living with osteoporosis and to build a larger
volunteer base
An opportunity for the Chapter to renew its commitment to volunteer recruitment,
training and development in a new area
An opportunity to participate in grass roots advocacy, where the efforts of
individuals can make a difference
Introduction to Osteoporosis Canada
Osteoporosis is a widespread disease where bones become thin and brittle and bone
strength declines. This leads to an increased risk of fracture, particularly of the hip, spine
and wrist. Osteoporosis is often referred to as “the silent thief” because, until fracture
occurs, bone loss happens without symptoms.
5
February 2006
While some degree of bone loss may occur as we age, the thinning of bone associated
with the disease osteoporosis is not a normal part of aging any more so than heart
disease, cancer or stroke. The majority of osteoporotic fractures can be prevented
through appropriate diet, lifestyle and pharmacological management. Left untreated,
osteoporosis has a devastating impact on patient morbidity, mortality and quality of life.
People with osteoporosis can experience loss of mobility and function, and unrelenting
pain. In a health system already struggling to manage the impact of chronic diseases in
Canada’s aging population, osteoporosis has grave consequences.
Founded in 1982, Osteoporosis Canada, a registered national charity, is the only
national health charity serving Canadians who have, or are at risk of, osteoporosis. The
national office, located in Toronto, provides resources and support to groups across the
country. Leadership comes from a national Board of Directors, a highly respected
Scientific Advisory Council, Division and Chapter leadership groups, and the national
office staff.
In November 2002, Osteoporosis Canada published the first and only evidence-based
clinical practice guidelines for osteoporosis in the world. The guidelines are intended to
provide Canadian physicians and policymakers with the information they need to
effectively manage this debilitating disease. They are also the foundation on which all of
Osteoporosis Canada’s programs, publications and recommendations are based. The
approach in formulating the guidelines involved the retrieval of almost 90,000 abstracts
and the review, evaluation and grading of 6,941 full citations according to strength of
evidence. The review was conducted by the organization’s Scientific Advisory Council,
made up of the leading osteoporosis experts in Canada. These guidelines put
Osteoporosis Canada on the international forefront of the battle to end the pain,
deformity, disability and death (from complications following hip fracture) associated with
the disease.
The vision of Osteoporosis Canada is a Canada without osteoporotic fractures. Its
mission is to work towards a future where all Canadians will:
• Be knowledgeable about osteoporosis
• Be empowered to make informed choices about their bone health
• Have access to the best osteoporosis care and support
• Benefit from research into the prevention, diagnosis and treatment of
osteoporosis.
The role of advocacy initiatives is to ensure that the goal of access to the best
osteoporosis care and support is realized.
6
February 2006
Key Messages
1. Osteoporosis is not just a disease of “little old ladies.”
• 1 in 4 women over 50 have osteoporosis
• At least 1 in 8 men over 50 have osteoporosis. More men will suffer an
osteoporotic hip fracture than will have prostate cancer. And the mortality rate
for men after a hip fracture is nearly twice that of women.
2. More than 1.4 million Canadians currently have osteoporosis. That number is
staggering when you consider it is equal to or greater than: the combined
population of Nova Scotia, Prince Edward Island and Newfoundland; the entire
population of Manitoba or Saskatchewan; or the population of Greater Vancouver.
3. In Canada, a fracture from osteoporosis occurs every 18 minutes. By the year
2041, the number of hip fractures is projected to be almost 100,000.
4. A patient with a hip fracture costs the healthcare system $21,385 in the first year
after hospitalization and $44,156 per year if institutionalized.
5. 50% of women who sustain a hip fracture do not return to their previous functional
state but become dependent on others for daily activities. About 20% require
long-term care.
6. Osteoporosis can result in chronic pain, disfigurement, loss of work, mobility and
independence, patient isolation and family stress, depression and even death, as
a result of complications from hip fracture.
7
February 2006
Introduction to the Advocacy Manual
The purpose of the advocacy manual is to introduce Osteoporosis Canada volunteers
and staff to the principles and procedures of an Advocacy Day. Many samples of letters,
forms and tables are provided, which you are encouraged to modify to suit your
particular event. It is important that anyone involved in advocacy on behalf of
Osteoporosis Canada be trained in the key messages concerning osteoporosis and our
principles regarding advocacy. Therefore, an outline of a training day is also provided.
Osteoporosis Canada wishes to thank the ALS Society of Canada for their generous
permission to draw on the contents of their advocacy handbook, Speaking for
Ourselves. It is a remarkable document, providing a detailed presentation of the
intricacies of planning and implementing an advocacy day. We are grateful for the
opportunity to benefit from their expertise and experience.
We also wish to thank Trish Bayne, who first undertook to train Osteoporosis Canada
staff and volunteers in advocacy and who created the precursor to this manual,
Speaking Out for Osteoporosis, in June 2004. We have incorporated her material into
this manual as well.
Finally, our gratitude and thanks to COPN and to all Osteoporosis Canada volunteers
who have dedicated so much time and effort to making life better for people living with
osteoporosis.
What is Advocacy?
The ultimate goal of advocacy is to make a difference. An advocate is someone who
recommends or supports a particular cause, a person who presents a case for, or
speaks on behalf of, another, particularly to address a perceived injustice or imbalance.
To advocate is to urge or support, especially by argument or exerting influence in a way
that will gain the desired response and bring about the required change.
•
Why Advocate?
o To raise general awareness with the public
o To raise general awareness with the government. Governments must
balance the competing interests of many groups and will react to those
who bring forward issues most effectively.
o To increase the visibility of the organization, which may have benefits in
other areas
o To achieve specific aims, such as improved prevention programs,
increased access to more drug therapies, better diagnosis of fracture
patients
o We are the voice for people living with osteoporosis.
8
February 2006
What to Advocate For…Choosing the Issues
The success of your advocacy initiative will depend on the careful development of the
key issues you plan to present. Those two or three issues must be:
ƒ Current and emerging issues
ƒ Universal to all or most people affected by osteoporosis
ƒ Relevant to the level of government you are addressing
ƒ Solvable
Another key component in the success of your advocacy initiative is the ask. This is the
particular course of action that you are asking the representatives to take. It is the one
thing you need, the ultimate goal towards which your event is leading. The ask will vary
depending on whom you are speaking with. It must be specific and tangible. Examples
include:
• Asking the MPP/MLA to write a letter to your provincial minister of health in
support of a particular action
• Asking them to pass on a petition
• Asking the MPP/MLA to raise the question in session
The other component is intelligence gathering. If this particular representative cannot do
what you are asking, then who can?
Which issues you finally select may depend on a number of factors. The overall purpose
is to take a step forward in service delivery, in education about osteoporosis, and in
building a relationship with political parties. Timing is important, and some issues may be
receiving more attention than others when you are planning the advocacy event. It may
be beneficial to use any momentum that has already been created to help draw attention
to issues around osteoporosis.
Identifying critical issues is not enough if your efforts are going to meet with success. It is
also important to provide decision-makers with feasible solutions that they can use to
help bring about change. Based on the 2002 clinical practice guidelines for the diagnosis
and management of osteoporosis in Canada, Osteoporosis Canada has identified three
issues and the strategies to address those three issues as immediate priorities for
government action:
1. Inadequate Diagnosis
The Issue: A significant number of people with osteoporosis are not treated before they
begin to fracture.
Key Facts:
• Canadian studies suggest that up to 50 percent of postmenopausal women who
presently have osteoporosis have not been diagnosed with the disease. The
figure is even higher for men. Even in patients who seek medical care because of
a low-trauma fracture – an almost certain indicator of osteoporosis in those over
50 – appropriate diagnostic measures are not taken.
9
February 2006
•
•
•
Currently, even when a patient over 50 is seen in an emergency room or acute
care hospital for fracture, only 10 – 20 percent are referred for bone density
testing. Almost two-thirds do not receive treatment for osteoporosis within one
year after fracture; only 4.5 percent of men receive any follow-up.
Despite the fact that 20 percent of patients who suffer a vertebral fracture will go
on to suffer an additional fracture within one year, two-thirds of vertebral fractures
still go undiagnosed.
Although all provinces fund diagnostic assessment of osteoporosis, access to
appropriate technology is not uniformly available. Bone mineral densitometry is
still not readily available or accessible in many rural and northern areas of the
country. There is also no consistency among provinces on the use of BMD
testing, for example, on the interval between tests or according to risk factors or
on standards of reporting.
Key Message: Osteoporosis Canada believes that all citizens, regardless of race,
gender, culture, language or socio-economic status, must have access to appropriate
use of diagnostic technology, as supported by the current best available evidence, to
confirm who has osteoporosis and who is at risk of fracture.
The Strategy: To improve access to bone mineral densitometry. Bone mineral density
(BMD) testing is considered to be the “gold standard” for diagnosing osteoporosis.
Currently, the best available form of BMD measurement is Dual Energy X-ray
Absorptiometry (DXA), which is used most commonly to measure bone mineral density
in the spine and hip. Individuals who are 50 and over with one major or two minor risk
factors and all individuals 65 or over should be tested. Osteoporosis Canada does not
recommend the use of BMD for mass screening of the population. Appropriate use of
standards established in the 2002 clinical practice guidelines for both diagnosis and
follow up will help to ensure proper use of technology, while eliminating unnecessary
testing in individuals without significant risk.
The Ask: The ask refers to one specific action that you want the provincial government
to commit to. In this case, the ask might be for the government to commit to funding new
bone densitometry machines in specific locations. Nova Scotia has been very successful
with their advocacy efforts in this regard.
2. Inequitable Access to Effective Treatment Therapies
The Issue: Presently, under most provincial drug plans, access to osteoporosis
medications is not in line with the evidence-based treatment recommendations
contained within the2002 clinical practice guidelines, which clearly rate and distinguish
among therapies according to the level of evidence that exists to support their use for
fracture prevention. For example, in P.E.I., no drugs are covered.
Key Facts:
• In Canada, when a new drug is brought to the market, Health Canada ascertains
its efficacy and safety before it is made available to patients.
• Once Health Canada issues an approval, the federally sponsored Common Drug
Review assesses the suitability of a drug for listing on a provincial drug formulary.
10
February 2006
•
•
•
Then each province reviews the therapy to decide whether or not it will be
covered by the provincial drug benefit plan. This is the plan that seniors and many
low-income individuals rely on for coverage.
If seniors, low-income, or other individuals want access to drugs not available to
them through the provincial formulary, they must pay for these drugs out of
pocket.
At present, very few osteoporosis medications are covered without restrictions on
provincial drug plans, and the length of time for reviewing and listing these
medications is increasing. This means that the most effective medications may be
restricted to only those who can afford to pay for them, creating a two-tiered
situation.
In many provinces, patients must suffer a fracture, continued rapid bone loss, or
intolerance to the listed treatment before they are granted coverage for potentially
more effective therapies.
Key Message: It is not rational to spend money on BMD testing to diagnose a patient
with osteoporosis and then not treat the disease with effective drugs. The cost of treating
a fracture is higher than the cost of preventing one.
The Strategy: To improve access to effective treatments. Osteoporosis Canada
believes that coverage of drugs on provincial formularies should be in accordance with
the designations of first-line therapy and grade of evidence as contained in the 2002
clinical practice guidelines. Moreover, the range of options covered should meet the
diversity of needs in the population. Some drugs will be more appropriate for certain
individuals than others. New therapies designed to reduce fracture risk should receive
due and expeditious review by drug review committees.
The Ask: In this case, the ask might be that the government commit to putting a newer,
potentially more effective medication on the formulary, even if on a limited access basis.
3. The Need for a Prevention Strategy Across the Life Cycle
The Issue: Because osteoporosis is a disease of the young that manifests itself in old
age, any strategy to prevent osteoporosis and osteoporosis-related fractures must target
children, adolescents and adults across the entire life cycle.
Key Facts:
• Almost 90 percent of bone growth occurs between the ages of 10 and 20.
• The most important contributors to the development of healthy bones in
children are nutrition, physical activity and hormonal development through
puberty.
• In addition, the preservation of bone, through attention to calcium, vitamin D
and exercise, is critical for women in their perimenopausal years, when all
women lose bone mass at an accelerated rate because of the decline in
estrogen levels.
• Though far less study of osteoporosis in men has occurred, evidence does
confirm that the disease is not gender-specific. Almost one-third of
osteoporotic hip fractures occur in men, and men have a higher mortality rate
11
February 2006
from the complications following a hip fracture than women: 34 percent of men
who experience a hip fracture will die within one year of fracture.
Key Message: Osteoporosis Canada recommends that provinces act swiftly to
undertake the development of a coordinated approach for the prevention, early
identification, management and follow-up of osteoporosis and osteoporosis-related
fractures.
The Strategy: To develop a coordinated approach requires the commitment of human
and financial resources to develop the appropriate infrastructure and strategies, and
must involve recognized experts in osteoporosis care. The Ontario Osteoporosis
Strategy (see Sample Issues Sheet, Appendix 9) offers a successful example of such a
strategy and the ask associated with it.
What is an Advocacy Event?
Advocacy events can take several forms. The one described in this manual is an
Advocacy Day, an opportunity for volunteers and staff from your Chapter to meet with
representatives from the provincial legislature – MPPs/MLAs and civil servants. A series
of meetings is set up for the day at which your goal is to get your message across as
clearly as possible and to encourage the government representatives to commit to a
course of action.
An Advocacy Day can be enhanced with:
• a legislative breakfast featuring a speaker
• a display in the legislative building with a volunteer to answer questions and a
video monitor featuring an OC video
• a volunteer doing height measurement, since loss of height can be one indicator
of osteoporosis
• a mail drop to each MPP/MLA on the day of the event with information about
osteoporosis
Selecting a Date for your Advocacy Event
There are no perfect dates. It will be impossible to find a date that works best for all
those attending on behalf of Osteoporosis Canada and for those you will be meeting;
however, some dates are better than others.
When selecting a date, keep in mind:
• Governments are more likely to act on issues brought to their attention shortly
before or after an election.
• Avoid holiday seasons because many elected representatives will be unavailable.
• Avoid dates on which other events are happening in the legislative buildings that
might provide competition.
• If possible, have the event coincide with other related issues, for example World
Osteoporosis Day, Osteoporosis Month or a Bone and Joint Decade milestone.
• Mondays are often the most suitable day to schedule visits. The mandatory
training session for volunteers and staff who are participating can be held on the
12
February 2006
•
•
Sunday afternoon, the day before. This allows more leeway for anyone who is
working; they need only adjust their schedule by one day rather than two.
Elected representatives are also more likely to be available at the start of the
week.
Most importantly, go with the best legislative date. This is most likely to be when
the house is sitting, as many of the elected officials return to their ridings when
the house is not in session. There are constituency days and weeks when
MPPs/MLAs are in their home ridings; for example, in Ontario the legislature does
not sit on Fridays. It is also a good idea to avoid a time when critical matters are
being debated.
13
February 2006
Involving the Osteoporosis Community
Those living with osteoporosis, their friends and family, can contribute to a planned
advocacy event in three essential ways:
• They can help determine what the issues are that you will present to the
government representatives.
• They may be able to provide contacts in the provincial government and/or they
may have met with different elected representatives or members of their staff on
previous occasions.
• They can tell a first-hand story of how osteoporosis affects their daily lives and
give personal support to the importance of the issue being addressed.
Below is a questionnaire that you can use to encourage participation in an Advocacy
Day.
Sample Questionnaire for Participation in Advocacy Day (Appendix 1)
1. What do you see as the single, most important osteoporosis issue in your province?
(Examples include: improved access to most effective medications, improved access to
bone mineral density testing, a coordinated strategy for the prevention and management
of osteoporosis.)
2. Why do you think this is the most important issue?
3. What would be the one thing that you would like the provincial government to do in
response to this issue?
4. What do you see as the second most important osteoporosis issue in your
province?
5. Why do you think this is an important issue?
14
February 2006
6. What would be one thing that you would like the provincial government to do in
response to this issue?
7. Are you interested in participating in an Advocacy Day at the provincial legislature?
This will involve attending a day (or half day) of training (mandatory) and a day of
meetings with elected officials and civil servants in the provincial capital. (It is likely, but
not inevitable, that the training will be on a Sunday, and the meetings on Monday.)
YES_______ NO_______
8. If YES, what provincial riding do you live in and who is your MPP or MLA?
9. If YES, please provide your name, phone number and email address, if applicable:
10. Do you, or anyone you know well, have contacts in the provincial government,
whether elected official or civil servant, whose name and title you are willing to share? If
yes, please provide the following information:
NAME:_______________________NAME:________________________
TITLE:_______________________TITLE:_________________________
PARTY:______________________PARTY:________________________
PHONE:_____________________PHONE:________________________
EMAIL:______________________EMAIL:_________________________
ADDRESS:___________________ADDRESS:_____________________
NAME:_______________________NAME:________________________
TITLE:_______________________TITLE:_________________________
PARTY:______________________PARTY:________________________
PHONE:_____________________PHONE:________________________
EMAIL:______________________EMAIL:_________________________
ADDRESS:___________________ADDRESS:_____________________
11. Do you have any questions?
It is suggested that you send an introductory letter to all those you would like to involve
in the event. The letter should:
• Provide a brief overview of the goals of the advocacy event
• Provide any details that have been confirmed about the event such as date
and/or location
15
February 2006
•
Ask for any information of personal relationships or previous meetings with
government personnel that may be used when arranging a meeting
An example of a letter and questionnaire that you might send to a participant is found
below. You are free to copy or modify the letter and questionnaire to suit your needs, but
please read the entire documents first to better tailor them to your event.
The results of your initial questionnaire will be incorporated into an introductory letter to
be sent to the members of provincial parliament and their political staff you wish to
target. Personalizing these letters, by reminding the recipient of a previous meeting they
have had with an osteoporosis volunteer or by telling them of someone they know with
osteoporosis, may help secure a meeting.
Although the media contact information received from this survey will not be used for the
advocacy event, this is an opportune time to build such a list that may be of use in
follow-up activities. For example, a local paper may be willing to print an article and
picture about local residents who participated in the event.
Sample Introductory Letter to the Osteoporosis Community (Appendix 2)
Dear FIRST NAME,
I am writing to ask for your help in improving the lives of people with osteoporosis.
Osteoporosis Canada and YOUR CHAPTER are planning an advocacy event for
DATE . The goals of this event are to raise the profile of Osteoporosis Canada with key
decision-makers, to focus on specific issues, and to speak out in support of ONE
SPECIFIC ASK .
To prepare for this event we need to develop a database of contacts within the provincial
government. By completing the following questionnaire, you will help us identify friends,
family, associates and other people who may know our government members: perhaps
a cousin who once worked for an elected representative, or a friend who is a public
servant. Think as broadly as possible.
At present, we have a limited number of contacts within the Ministry of Health, but many
issues cross into other departments. Even issues that lie squarely in the Ministry of
Health often require interdepartmental support to be resolved.
During our Advocacy Event, we plan to meet with ministers, MPPs/MLAs and their staff.
Our approach is to build relationships with as many key individuals as possible.
From the information you provide, we are establishing a list of people in the provincial
government who are currently familiar with osteoporosis, or some particular aspect of
osteoporosis. We will try to schedule meetings with as many of these contacts as
possible on DATE . Further information about how you may become involved in this
project will follow.
16
February 2006
This can be used locally to identify and nurture champions for the osteoporosis cause
within the provincial government. Please complete the following information by DATE
and send to: CONTACT NAME AND ADDRESS.
All information collected will be held in strictest confidence.
Thank you for your participation. Your help is appreciated and critical to the success of
this event.
Sincerely,
YOUR CHAPTER CHAIR
PS Please do not make appointments with any contacts you may be able to provide. We
will be in touch with further information.
Sample Questionnaire (Appendix 3)
1. Who is the member of provincial parliament for your riding?
_______________________________________________
2. Have you ever met with him or her for any reason? ____ Yes ____No
3. Does the member have knowledge of osteoporosis? ____Yes ____No ___Don’t know
If yes, please explain:
_____________________________________________________
4. In the roster of the provincial government’s public servants, are there any individuals
you have met or dealt with regarding osteoporosis? If yes, please provide their names.
Name: __________________________ Name: ___________________________
Position: ________________________ Position: ___________________________
Email: __________________________ Email: _____________________________
Tel: ____________________________ Tel: _______________________________
Fax: ____________________________ Fax: _______________________________
5. Are there other individuals within the provincial government you may know who have
a particular interest in osteoporosis? If yes, please provide their names and contact
numbers.
Name: _____________________________ Name: _______________________
Position: ___________________________ Position: ______________________
Email: _____________________________ Email: _________________________
Tel: _______________________________ Tel: __________________________
Fax: _______________________________ Fax: _________________________
6. Do you know anyone that works in the media in your community or region?
____ Radio ____Television ____Newspapers
7. If yes, what are their names, addresses, email, fax and phone numbers?
Name: ___________________________ Name: _________________________
Address: _________________________ Address: _______________________
Email: ___________________________ Email: __________________________
Tel: ______________________________ Tel: ___________________________
17
February 2006
Fax: _____________________________ Fax: ___________________________
Note: Please do not contact any of these individuals at present. We will be in touch
shortly.
Please send by DATE in the stamped return envelope provided.
Name: __________________________________________________________
Phone Number: (______) ___________________________________________
Date: ___________________________________________________________
Thank you for your help!
Gathering Participants for the Advocacy Event
General Announcement. Once a date for the event is final and the issues
selected, it is time to recruit participants for the day. An effective way of informing people
living with osteoporosis and Chapter volunteers is through an announcement at
Chapter/division and/or support group meetings.
A sample memorandum and questionnaire for potential participants will be found on the
following pages. You are free to copy or modify the memorandum and questionnaire to
suit your needs, but if you do so, please ensure that you read the documents in their
entirety, and tailor them to your needs and event.
Direct Requests. The general announcement sent to local groups will help inform
potential participants about the event and may encourage some volunteers to inquire
further. It will, however, be necessary to conduct follow-up calls and to recruit additional
volunteers for the event. Many people will respond positively to a direct request for their
participation.
Be sure to inform participants that they are required to attend the training session prior
to the event and to gather any information required for accommodation and travel.
Confirmation. A confirmation letter should be sent out three weeks before the
event to all those who have agreed to participate. A sample confirmation letter is
provided below. You are welcome to copy or modify this letter to suit your needs, but if
you do so please ensure you read it in its entirety and tailor it to your needs and event.
Assign Responsibilities. A successful advocacy day will depend in large part on
having a committed group of staff and volunteers to carry out the different tasks. These
tasks will include: letter-writer (often the chapter chair) to write letters to potential
participants in the advocacy day, to the elected representatives, and thank you letters
after the event; someone to do follow-up calls once the letters have gone out; a
supervisor of the Coordination Centre on the day of the event to ensure that everything
runs smoothly; a trainer to prepare participants for the event; and a note-taker at the
meeting with the representatives.
18
February 2006
Sample Memorandum Inviting Participation (Appendix 4)
Date
To: YOUR CHAPTER Volunteers
From:
Subject: Invitation to Attend EVENT NAME
YOUR CHAPTER is planning an advocacy event at NAME to be held on DATE. The
purpose of this event is to raise the profile of osteoporosis with key decision-makers and
to advocate for YOUR SPECIFIC ISSUE.
We are currently writing to all members of provincial parliament (all parties) and to
NAME OF YOUR HEALTH MINISTRY to request a brief meeting for 20 to 30 minutes
on DATE. It is our hope that we will have enough volunteers attending the event that
three people can attend each meeting. One of these people should be someone living
with osteoporosis. It is difficult at this time to say how many meetings we will have or
with whom, but we will pair those attending with the elected representative responsible
for their constituency.
The success of this important event rests on you. Training will be held on DATE from
TIME at HOTEL NAME AND ADDRESS. You must attend the training session if you
wish to participate in the advocacy meetings on the DAY!
Volunteers who wish to stay at the hotel on the night of the training will be eligible for our
very favourable group discount rate of $XX plus tax for both single and double rooms. If
you are willing to share a room, the costs will be minimized YOUR CHAPTER cannot
cover this cost for you. We will have a conference room at the hotel reserved for the day
on DAY OF EVENT as well, where volunteers can gather before and after the meetings
to provide feedback, enjoy some refreshments or just rest and relax. Depending on how
many volunteers are able to attend, some people may be asked to attend a morning
meeting with one group and another meeting in the afternoon with another.
At this point, we need an indication from you as to whether you will be in a position to
attend the training, and then one or two meetings on DATE . Please let us know by
faxing or emailing your answers to the enclosed questionnaire. As the legislative
buildings will need to have names in advance of those who will be attending, it is very
important that we hear from you with as definite a commitment as possible.
We sincerely appreciate your interest in supporting this important initiative. We hope to
see you there on DATE.
Warm regards,
YOUR CHAPTER CHAIR
19
February 2006
Sample Questionnaire for Participants (Appendix 5)
Please complete one form per person, and return it, by fax NUMBER or email
ADDRESS by DATE.
Name: __________________________________________________________
Address: _________________________________________________________
Daytime Phone Number: ____________________________________________
Email Address: ____________________________________________________
1. I am able to participate in the mandatory training session on DATE at TIME and the
advocacy event on DATE. ____ YES ____NO
2. I require a hotel room for one night - DATE: ____YES ____NO
a) If yes, please advise:
Size: ____Single ____Double
Smoking: ____YES ____NO
Wheelchair Accessible: ____YES ____NO
b) Please provide your credit card information in order to confirm the reservation:
Card Type: ____VISA ____MASTERCARD
Card Number: ____________________________________
Expiry Date: ____________________________________
Name on Card: ____________________________________
3. I am able to attend meetings: In the morning ____
In the Afternoon ____
Between (please specify time): ________________
4. I am a person living with osteoporosis. ____ YES ____NO
5. I require transportation assistance (i.e. wheelchair accessible vehicle) to travel from
the hotel to the Parliament Buildings. ____YES ____NO
6. Please specify any additional accommodations you require:
______________________________________________________________________
_____________________________________________________________________
20
February 2006
Sample Confirmation Letter (Appendix 6)
DATE
Dear NAME,
Thank you for your participation in the NAME OF EVENT taking place DATE . With
your help, we will meet with approximately NUMBER members of the provincial
parliament and/or their political staff to help raise the profile of osteoporosis. Our main
goal is to be advocates for YOUR SPECIFIC ISSUE .
The mandatory training program will take place at HOTEL NAME AND ADDRESS from
TIME on DATE. This meeting will provide you with additional information about the
issues and how to deliver these messages most effectively. You will also be provided
with a list of people you will meet and the other members of your team.
A room has been booked in your name at HOTEL NAME and you may check in any
time after CHECK-IN TIME. If you require an earlier check-in time, please notify
CONTACT NAME at PHONE NUMBER as soon as possible. Check-out time will be at
CHECK-OUT TIME on the day of the event and luggage may be stored in the meeting
room after that. The hotel does provide parking at a cost of $XX per day.
Thank you once again for your participation and please do not hesitate to contact me at
PHONE NUMBER or EMAIL ADDRESS if you have any questions.
Sincerely,
P.S. Please remember to bring PHOTO ID, since it may be required by security at the
Parliament Building.
21
February 2006
Contacting Your Provincial Government
Information regarding contacting your elected representative can be found on provincial
government web sites or by telephone. Please refer to the following list of web site
addresses and phone numbers to obtain the information you require. Have your postal
code available.
PROVINCE
National
Alberta
British
Columbia
Manitoba
New
Brunswick
Newfoundland
& Labrador
Nova
Scotia
Nunavut
Ontario
Quebec
Saskatchewan
Prince
Edward Island
Web Site
www.parl.gc.ca/information/abo
ut/people/house/Postal
Code.asp?Language=E&sourc
e=sm
www.assembly.ab.ca/net/index
.aspx?p=mla_home
www.legis.gov.bc.ca/mla/3-11.htm
www.gov.mb.ca/legislature/me
mbers/constituency.html
http://app.infoaa.7700.gnb.ca/g
nb/pub/ListMLA1.asp
www.hoa.gov.nl.ca/hoa/membe
rs/
www.gov.ns.ca/legislature/ME
MBERS/directory/constituencie
s.html
www.assembley.nu.ca/english/
members/index.html
http://olaap.ontla.on.ca/mpp/da
CurRdg.do?locale=en&ord=RD
G NAME
www.assnat.qc.ca/eng/Membre
s/circ 1st.html
www.legassembly.sk.ca/memb
ers/members.htm
www.assembly.pe.ca/members
/index.php
Local Phone Number
n/a
Toll-free Phone Number
1-866-599-4999
780-427-2826
310-0000 (780) 427-7191
250-387-3785
1-800-661-8683
1-866-MANITOBA
1-800-282-8069 (ext. 3225)
506-453-2506
1-800-308-2922
709-729-3405-
1-877-729-7987
902-424-5200
1-800-565-1504
n/a
1-877-334-7266
416-325-7500
1-800-677-8683
n/a
1-866-337-8837
306-787-2376
1-877-958-VOTE
n/a
1-888-234-VOTE
In addition, some ministries will provide a staff chart, which you may find helpful when
trying to determine the most important contacts to make.
Writing a Letter to the Representative
Once you have obtained a list of names, mailing addresses and phone numbers for
each of the parties and have determined which elected representatives you would like to
target first, your next step is to prepare a letter to those representatives. The
representatives you will target will include anyone who you know has a personal
connection to osteoporosis or a special interest in osteoporosis, or is the representative
for the riding of one or more of the participants in your event. The purpose of this letter is
to:
• Provide an introduction to Osteoporosis Canada
• Provide an explanation as to why you are requesting a meeting
22
February 2006
•
•
•
•
Request a meeting on the day of your advocacy event
Provide any personal information you may have gathered from your survey of the
osteoporosis community that might aid you in securing the meeting, such as a
previous meeting between the representative and a member of Osteoporosis
Canada
Provide a contact name and number, i.e., the person writing the letter
Provide a date by which you will contact the office.
A sample letter to the representative follows below. Feel free to copy or modify this letter
to suit your needs, but if you do so, please ensure you read it in its entirety and tailor it to
your needs and event.
Please note the person who sends the letter should also be the person handling the
scheduling of appointments. Once you start receiving responses and the scheduling of
appointments begins, it is much simpler to have all communication go through one
central point to avoid confusion and mistakes. It is suggested that you track time and
date in the footer of your schedule sheet (if you are doing this on a computer) so you
know which is the most recent version.
Sample Letter to Representative (Appendix 7)
DATE
ADDRESS
Dear LAST NAME:
Osteoporosis is a potentially crippling disease characterized by low bone mass and
deterioration of bone tissue, leading to increased risk of fracture. 1.4 million Canadians
have osteoporosis, and another 2 million are at risk of developing the disease. (NOTE:
PUT IN PROVINCIAL FIGURES IF AVAILABLE OR EXTRAPOLATE ACCORDING TO
YOUR PROVINCE’S PERCENTAGE OF THE POPULATION.) Given the increasing
proportion of older people in the population, the incidence of osteoporosis is expected to
rise steeply over the next few decades.
Volunteers of Osteoporosis Canada, YOUR CHAPTER , including individuals affected
by osteoporosis, will be having an osteoporosis awareness day in CITY on DATE. A
constituent from your riding will be present. We are requesting a short meeting with you
so that we can:
•
•
•
Inform you briefly about osteoporosis, the impact of the disease in your
community and the role played by Osteoporosis Canada, YOUR CHAPTER
Update you on our progress in providing services and funding research for
osteoporosis
Share information on topics of mutual interest. These include:
o YOUR SPECIFIC ISSUE
23
February 2006
I understand that in the past you have attended NAME OF EVENT osteoporosis
fundraiser and have met with NAME OF PERSON. We do hope that you will be able to
accommodate a 20-30 minute meeting into your busy schedule, and look forward to
meeting with you. We will call you by DATE to arrange a convenient time to meet.
Sincerely,
YOUR CHAPTER CHAIR
Follow-up Calls
Although you will receive some responses to the letters, the majority will require you to
make a follow-up phone call. This can be a very time-consuming task; do not
underestimate the time you will require to do it.
Your follow-up calls should:
• Identify who you are
• Confirm receipt of the letter to the representative
• Request an appointment time
A communication log has been provided below to help you keep track of your phone
calls with each of the offices, since it may require a number of attempts before you can
confirm an appointment.
Sample Phone Log (Appendix 8)
DATE TIME CONTACT PERSON MESSAGE FOLLOW-UP ITEMS
24
February 2006
Scheduling Appointments
When creating the schedule, keep in mind:
• Two to three individuals should attend each meeting. If possible, each group
should consist of a member of the Executive Council or a member of COPN who
can act as an expert on Osteoporosis Canada. At least one of the attendees
should be a person living with osteoporosis who can provide a first-hand
perspective on the issues. Also, one person should live in the riding of the
representative you are meeting. Other possibilities include a caregiver to
someone with the disease or a physician, clinician or allied health professional.
• Try to aim for a relatively even distribution of appointments throughout the day.
• Be mindful of any travel requirements your volunteers might have.
• If there are people coming from out of town, make their trip worthwhile by
scheduling them for two to three appointments.
• Schedule a half hour in between meetings to account for any late meetings and
for travel time between appointments.
• Ask those living with osteoporosis how many appointments they would like to
attend in order not to become overtired.
• Make sure the right people meet together.
o If possible, schedule volunteers to visit their local member of provincial
parliament.
o Try to match a member of provincial parliament and their staff members,
who have direct influence on the issues you are presenting, with those who
have a direct influence on Osteoporosis Canada. For example, if you are
visiting the Minister of Health, schedule the President and CEO of
Osteoporosis Canada and the Chapter Chairperson to attend the meeting.
25
February 2006
Event Logistics
Accommodation
Although it is not possible for Osteoporosis Canada and its chapters to cover
accommodation costs for the volunteers who attend the event, the organization can still
assist by locating a hotel close to the Parliament Buildings and requesting a group rate.
A meeting room at the hotel can also be used for the training session and as the
Coordination Centre on the day of the event.
The ideal hotel will:
• Be a short distance from the Parliament Buildings
• Be accessible by public transportation
• Have a meeting room available to use for the training session and as the
Coordination Centre on the day of the event
• Provide a group rate
Site Visit
The site should be visited a few days before the event. Even the best of contacts at the
Parliament Buildings will not be able to provide you with all the information you need.
Things to do on a site visit:
• Request a map of the Parliament Buildings
o Highlight which buildings and wings participants will be visiting
o Record on the map any sections that do not connect (for example, you can
only access the central core from the east side of the building on levels
one and two)
o Mark down the room numbers on the map (i.e., East Wing 1-40, Centre
Core 40-60 and West Wing 60-100)
o Indicate washrooms and visitor parking
•
Meet with Security
o Confirm whether cell phones can be used inside the buildings
o Provide security with the list of participants and the parliamentarians and
their staff they will be meeting
o Ask how much time participants will need to go through security
o Ask if photo ID will be required
o Ask if participants can come and go from the building once they have
passed security or must they check in with security each time they enter
the buildings
o Determine if security require any other information
o Security should also be able to inform you of any other events happening
the same day that might restrict movement around the buildings
26
February 2006
Transportation
Transportation on the day of the event should run smoothly if someone takes the time
before the event to:
• Ascertain visitor parking at the Parliament Buildings or locate any public parking
lots nearby that participants can use
• Suggest that participants car pool in either their own cars or taxis if parking is
limited or unavailable
• Order any taxis that might be required the day before the event
The Coordination Centre
The Coordination Centre will play a number of important roles on the day of the event.
Volunteers can use the room as a place to meet before and after their meeting and the
person in charge of the Coordination Centre can offer assistance for any unseen
complication.
The supervisor of the Coordination Centre will require:
• A list of all meetings, contact names and numbers, building names and room
numbers
• A copy of the schedule sorted by participants and a copy sorted by elected
representatives
• A map of the Parliament Buildings
• A phone or cell phone for which volunteers and staff have the number
• Extra presentation packages
• Taxi company phone number
• If cell phones can be used, cell phone numbers of all staff or volunteers stationed
at the Parliament Buildings who can go and meet participants who may be lost or
require assistance going from one meeting to the next
• A message board and markers
The Coordination Centre should also offer:
• Light refreshments for volunteers and staff
• Space to store luggage and bags after checkout
The Coordination Centre supervisor will require one or two phones to help keep matters
running smoothly. In addition, volunteers visiting the Parliament Buildings should have
cell phones that they can use on the day of the event (if such use is allowed).
Provide volunteers with a list of these phone numbers and encourage them to make use
of the numbers if they get lost, become delayed in an earlier meeting, require
assistance, or have a question or concern.
It is highly probable that on the day of the event, some meetings will be cancelled,
others may be late or rescheduled to another time in the day. You will need a method of
receiving this information and communicating it to volunteers and staff. There are a
number of ways this can be accomplished:
• If the staff person who has acted as the contact person throughout the scheduling
process is not attending the event and is remaining at the office, he or she can
27
February 2006
•
•
record any change in schedule and pass it along to the Coordination Centre
supervisor.
If there is not a staff person available at the office to accept any change in
schedule, the voicemail message should be changed to request that those calling
to reschedule or cancel any appointments call the Coordination Centre
supervisor’s phone number.
If you know the phone number that will be used by the Coordination Centre
supervisor well in advance, it is possible to leave that number with the office of
the elected representative and request that the office use it if there are lastminute changes.
Once the Coordination Centre supervisor receives information about changes, it can be
passed on to those concerned, either when they come to the Centre or by calling staff at
the Parliament Buildings to relay the message to those affected by the change in
schedule.
Creating Presentation and Training Packages
The next step in preparing for your advocacy event is to create the training and
awareness materials. This section will assist you in developing these materials.
You will create two groups of presentation folders. The first will be left behind for the
elected representatives and their staff members; the second is for volunteers and
Osteoporosis Canada staff. The volunteer presentation folder will contain all of the
information that is in the elected representative’s folder, plus some additional resources.
To avoid confusion and accidentally leaving a volunteer’s folder with an elected
representative, it is strongly suggested that different colored folders be used and that the
folders be labelled appropriately.
The presentation package for the elected representative and their staff should include:
• Recent Osteoblast newsletter
• Recent COPING newsletter
• The Osteoporosis Canada brochure Helping you take care of your bones
• Information sheets including:
o Provincial Osteoporosis Facts and FAQs
o OC Fact Sheets
• Directory of Chapter Executive Council and staff members
• Issue(s) and Solution(s) sheets(s)
• President/CEO’s business card or that of most senior person attending
Be sure to take extra copies of the packages to ensure that there are enough for
everyone, in case more people attend the meeting than anticipated.
Volunteer and Osteoporosis Canada staff training packages will have the same items as
the elected representatives’ folders, as well as the following resources:
• Agenda for the training session
• Copy of training overheads
• Tip sheet – the “Visiting Your Elected Representative” tip sheet will be found in
the pages following
28
February 2006
•
•
•
•
•
Map of the Parliament Buildings and surrounding area
Blank “Visit Report” sheet – a sample “Visit Report” will be found in the pages
following
Name tag
Contact numbers for the day of the event
Copy of the schedule of meetings for the day. (See the section on Contacting
Your Provincial Government.)
1. Issues and Solutions Sheets
The Issues and Solutions sheets will be the most important part of the package. To
make these sheets more noticeable, they should be:
• Photocopied onto a different colour paper
• Located on the right side of the folder and in front of the information sheets
• Tiered/staged by folding the bottom in order to view the title of each sheet
The first sheet should be “Osteoporosis Issue(s).” This sheet should be:
• A brief overview of the issue(s) being presented (maximum three, one issue is
best)
• No more than one paragraph per issue
The next one, two (or three - maximum) sheets provide more information on each issue
and the solutions. These sheets should include:
• A more detailed explanation of the issue(s)
• Ways in which Osteoporosis Canada is currently addressing the issue(s)
• The specific ask as to how the individual can provide assistance
They may also include:
• Background research or fieldwork that Osteoporosis Canada has already
conducted into the issues
• Calculations and figures to demonstrate the point
Keep the information short, simple and to the point. The idea is not to overwhelm with
information and statistics.
29
February 2006
Sample Issues Sheet (Appendix 9)
Implementation of the Ontario Osteoporosis Strategy NOW
A coordinated and targeted Ontario Osteoporosis Strategy has the potential to
substantially reduce the number of fractures related to osteoporosis. Reducing these
fractures not only lessens the suffering of people living with osteoporosis, it also frees up
valuable health care resources in hospitals, emergency rooms and long-term care
facilities, which can then be used to treat other ailments and reduce waiting times.
Improved access to the best evidence-based therapies
Although there is no cure for osteoporosis, there are several “First-line, Grade A”
therapies that significantly reduce osteoporotic fractures. Unfortunately, all of these best
therapies are only available through the Ontario Drug Benefit Plan on a limited use basis
- after the patient on an available therapy has a fracture, continues to lose bone density,
or if they are unable to tolerate the available therapy.
Sample Background and Solutions Sheet A (Appendix 10)
Implementation of the Ontario Osteoporosis Strategy NOW
Background
There are about 57,000 osteoporotic fractures in Ontario each year, including 9,000 hip
fractures. Direct treatment costs are more than $500 million each year and will keep
rising as the population ages. Members of Osteoporosis Canada and other experts and
partners from across Ontario held a series of meetings and working sessions with the
Ministry of Health and Long-Term Care to develop an Ontario Osteoporosis Strategy.
When implemented, the Strategy will:
• Reduce the incidence of osteoporotic fractures
30
February 2006
•
•
•
Improve osteoporosis education for health care professionals and the public
Decrease wait times for acute care in hospitals for all conditions, especially
orthopeadic procedures such as joint replacements
Reduce the need for long-term care due to osteoporotic fractures
A five-year investment in the Ontario Osteoporosis Strategy will yield substantial
savings in hospital and emergency costs and decrease wait times for such
services for all Ontarians.
Proposed solutions
• Implement and fund the Ontario Osteoporosis Strategy through the Ministry of
Health and Long-Term Care.
How you can support better bone health for all Ontarians today:
Write a letter to the Minister of Health and Long-Term Care asking for the immediate
implementation of the Ontario Osteoporosis Strategy. Please send a copy of the letter to
Osteoporosis Canada.
Sample Background and Solutions Sheet B (Appendix 11)
Improved access to the best evidence-based therapies
Background
In 2002, Osteoporosis Canada released the first ever evidence-based clinical practice
guidelines for the diagnosis and management of osteoporosis in Canada. These
recommendations are based on the review and grading of almost 90,000 abstracts and
7,000 full citations according to the most rigorous scientific standards. In addition to diet,
exercise and lifestyle recommendations, the guidelines include recommendations for the
following “first-line, Grade A” therapies for the treatment of osteoporosis:
• Alendronate
• Risedronate
• Raloxifene
Since the publication of the guidelines, a new drug, parathyroid hormone (PTH,) has
been approved for use for severe osteoporosis with a lifetime exposure of 18 months. It
too has been proven to reduce the fractures associated with osteoporosis.
31
February 2006
Proposed solutions
• Remove limitations to the best available osteoporosis drugs through the
Ontario Drug Benefit Plan.
• List PTH on the Ontario Drug Benefit Plan.
How you can support the 500,000 Ontarians with osteoporosis today:
Write a letter to the Minister of Health and Long-Term Care asking for the removal of
limitations to the best available osteoporosis drugs through the Ontario Drug Benefit
Plan and to add PTH to the list. Please send a copy of the letter to Osteoporosis
Canada.
2. The Information Sheets
Information sheets provide further background information on osteoporosis, its impact in
your province, as well as information about Osteoporosis Canada. They should be
located on the right side of the folder behind the Issues and Solutions sheets. You may
also want to add the OC Fact sheets on Physical Activity, Calcium, Diagnosis and Drug
Treatments.
Tips for Visiting Your Elected Representative
Helpful tips to remember when visiting your elected representative at national, provincial
or municipal level:
•
•
•
•
•
•
•
Fight nervousness. Be confident; you understand the issues. Remember, they
are your elected representatives.
Take notes. Decide ahead of time who will be equipped as the official note taker.
Stay on message. Know what you want to say, say it, and summarize what you
have said.
o Stay focused
o Be sincere and passionate
o Introduce Osteoporosis Canada, explaining the mission
o Tell your story
o Use examples to illustrate the problem and suggest a solution
Be polite. No matter what your political stance, always be polite. Affirm what you
can about their policies, their actions, etc. Stay clear of unrelated or contentious
issues. Thank them for their time.
Get to the point. Use your time wisely and focus clearly on the issues. You can
follow up later on other matters that did not get raised during the meeting. They
now know you and your issues.
Ask questions. Briefly canvass the representatives about what they know about
osteoporosis. This will serve as a basis for the conversation and for follow up.
You can fill in the gaps.
Answering questions. You may not know the answer to every question. It is
acceptable to say so, indicating that you will find out the answer and get back to
them.
32
February 2006
•
•
•
Open doors. This meeting should serve to establish a dialogue between your
chapter and the government member. Let the representative know you will follow
up, and even propose a follow-up meeting at some point in the future.
Offer expertise by way of resources about osteoporosis whenever needed or
whenever they think it might be needed.
Enjoy yourself. This is an opportunity to influence public policy in a positive way.
This is democracy in action!
Tips on Conducting a Successful Meeting
•
•
•
•
•
•
•
•
•
In advance of the meeting, designate one of the group members as team leader
to introduce the group, to get the event started and to ensure the meeting stays
on track
Designate another group member as note-taker to record information such as
connections to osteoporosis, offers of assistance, specific requirements for follow
up, etc.
Stick to the agenda to keep the event on track. A sample agenda can be found
below.
Skip ahead to the key messages if delayed by a question
Talk and listen to the participants
State your ask. The type of support you will request will depend on the status and
responsibilities of the person you are visiting, for example, if the Finance Minister,
you would request support for additional funding.
Be prepared for questions such as “How can I help?” “What can I do?”
Debrief with your group immediately after the meeting to confirm that notes are
correct and to record any suggestions for future meetings or other follow-up
actions
Complete the Visit Report and return it to the Coordination Centre.
Sample Agenda for the Meeting (Appendix 12)
Agenda
1. Keeping in mind the One-Minute Rule (see below), introduce the group
members and confirm the length of the meeting (20 – 30 minutes)
2. Ask if the elected representative or the delegated representative has any
prior knowledge of osteoporosis or Osteoporosis Canada
3. Provide a brief overview of osteoporosis and Osteoporosis Canada,
referring to the contents of the folder for more information
4. Introduce the issue(s) and solution(s)
5. Question and answer period
6. Confirm any commitments or offers of assistance and the person and
timing for follow-up
7. Thank the representatives(s)
8. Leave behind information packages
The One-Minute Rule: One person will act as spokesperson. In one minute, they
introduce the group, saying:
33
February 2006
•
•
•
•
•
Who you are
Who you represent
Why you are there
Your ask (what you need and how you want them to do it)
Optional: what you can offer in return. Examples: invitation to the
next chapter meeting, help in promoting what the government has
already done in support of your cause, patient contacts
Sample Visit Report (Appendix 13)
Visit Report
Person visited: _________________________________________________
Position: ______________________________________________________
Additional staff member(s): ________________________________________
______________________________________________________________
Position(s): ____________________________________________________
_____________________________________________________________
The Osteoporosis Canada team included: ____________________________
_____________________________________________________________
_____________________________________________________________
Topics covered: ________________________________________________
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
General response: ______________________________________________
_____________________________________________________________
Questions raised: _______________________________________________
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
Suggestions for follow up: ________________________________________
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
34
February 2006
Training
Training Goals
All volunteers and staff members participating in the advocacy event must attend a
training session prior to the event. The training session will cover five main areas with
the following objectives:
• To provide all participants with an understanding of the goals of the advocacy
project and the Osteoporosis Canada approach to advocacy. At the end of this
session volunteer and staff members should:
o Understand why it is important for Osteoporosis Canada to participate in
the advocacy process
o Understand the Osteoporosis Canada principles of advocacy
o Understand their role in the process and why their participation is important
to the success of the event
o Understand the issue being brought forward – it may vary from province to
province
o Understand that they can continue the project at the local level
• To teach participants how to conduct a successful meeting with their elected
representatives or public servants. At the end of this session volunteers and staff
should:
o Know how to keep control of the meeting
o Know how to convey the issues most effectively
o Understand the roles of each group member attending the meeting
o Know how to answer questions
• To educate the participants about the two or three issues to be presented. At the
end of this session volunteers and staff should:
o Understand the issues being presented and why they are important issues
o Be able to answer basic questions about the issues. If there is a question
you cannot answer immediately, find the answer and get back to the
participant as soon as possible.
• To explain the logistical aspects of the advocacy day. At the end of this session
volunteers and staff should:
o Know how to read the schedule to identify their appointments and group
members
o Understand how to read the building map and to find the way to their
appointments
o Know which phone numbers they can use the day of the event if they
require assistance
• To provide an opportunity for the participants to meet. This session should
provide volunteers and staff with the opportunity to:
o Meet other group members and select individual roles
o Select a location to meet before the meeting
o Collect the biographical sketches of elected representatives who will be at
the meeting
35
February 2006
Sample Training Agenda – Speaker’s Version (Appendix 14)
Training Agenda – Speaker’s Version
A. Welcome
• Thank everyone for taking the time to participate
• Introduce the speakers
• Ensure everyone has a package
B. Review of the Agenda
• Read the agenda out loud
• Point out the designated question periods and ask if participants could note their
questions, please, and wait until one of these periods because of the large amount of
material to be covered and the limited time available
• Remind participants there will be an opportunity at the end of the formal
presentation to meet with the speakers and ask individual questions
C. Review of the Training Package and Materials
• Inform participants that they have a copy of all the materials they will be leaving
behind with those whom they will meet
• Point out their copies of the agenda and overhead handouts
D. Presentation
a. THE IMPORTANCE OF ADVOCACY: Introduction to Advocacy and the
Osteoporosis Canada Approach
b. Tips for Visiting Your Elected Representative
c. Question and Answer Period One
d. THE ISSUES AND SOLUTIONS: Review of Supporting Documents
e. Question and Answer Period Two
f. FINDING YOUR WAY: Review of the Logistics
i. Schedule
ii. Site Map
iii. Transportation
iv. Contact Numbers
g. Question and Answer Period Three
E. Mingle, meet group members and pick up extra materials
• Invite participants to find their group members to discuss where they will meet
before their appointment and who will take on which role
• Remind participants to pick up copies of the biographical sketches of the elected
representatives they will be meeting
36
February 2006
Sample Training Agenda – Participant’s Version (Appendix 15)
This is the version of the agenda that will be included in participants’ packages.
Training Agenda
A. Welcome
B. Review of the Agenda
C. Review of the Training Package and Materials
D. Presentation
a. THE IMPORTANCE OF ADVOCACY: Introduction to Advocacy and the
Osteoporosis Canada Approach
b. Tips for Visiting Your Elected Representative
c. Question and Answer Period One
d. THE ISSUES AND SOLUTIONS: Review of Supporting Documents
e. Question and Answer Period Two
f. FINDING YOUR WAY: Review of the Logistics
i. Schedule
ii. Site Map
iii. Transportation
iv. Contact Numbers
g. Question and Answer Period Three
E. Mingle, meet group members and pick up extra materials
Tips on Training
•
•
•
•
•
•
•
Hand out the training packages as participants arrive so they can take a few
minutes before the meeting starts to familiarize themselves with the materials.
Ask participants to note down their questions and keep them until an assigned
question period.
Schedule one or two stretch/refreshment breaks during the training.
Make sure everyone has found a copy of the presentation overheads in their
training packages.
Be prepared to explain why the two or three issues that were selected were
chosen over others. Inform the participants of the criteria used in selecting the
issues and that many issues are valid, but that to gain the most success from the
event, only two or three can be chosen.
Follow the schedule and don’t skip ahead. Ask participants who have questions
about a topic not yet covered to hold on to their question until after the topic is
covered, since the presentation may provide the answer.
Do not become frustrated if participants seem to have an unusually large number
of questions. Remember to keep to the schedule and offer to speak to those who
have particular questions that have not been answered after the training session.
37
February 2006
Wrap Up
The final stage of the advocacy event and the first step to future advocacy work includes
thanking all those involved and evaluating the success of the event. These are important
final steps and should be conducted within one or two weeks following the meetings.
Thank You Letters
•
To the Elected Representatives and Their Staff Members
A sample thank you letter to the elected representatives and their staff is provided
below. The letter provides a good opportunity to repeat or follow up on any offers of
assistance or requests for information that were made during the meeting. It is the next
step in building a relationship with government decision-makers, so it is a good idea to
take the time to make these letters personal.
Additional thank you letters can be sent to the elected representatives and their staff
from the volunteers who attended the meeting. These hand-written or typed letters will
not only help to keep osteoporosis in the minds of decision-makers, but will also
demonstrate that Osteoporosis Canada has the support of those it serves and strives to
help.
Sample Thank You Letter to Representative (Appendix 16)
DATE
Dear LAST NAME
On behalf of people living with osteoporosis, their family members, and the volunteers
and staff of Osteoporosis Canada, we would like to thank you for meeting with our
representatives on DATE.
Each one of the participants came through the day with a renewed sense of commitment
to advancing the cause of osteoporosis because of your warm reception and interest in
the issues facing those living with osteoporosis.
The bone deterioration and subsequent fear of fracture that are the hallmarks of
osteoporosis, and the fact that the population is aging, mean that the needs of those
with osteoporosis and their families are urgent. Increased support for YOUR ASK will
enable us to meet these needs so that a person with osteoporosis may live at home with
a sense of independence, dignity, and hope.
We look forward to working collaboratively with you to improve the quality of life for those
living with osteoporosis and their families.
Yours truly,
38
February 2006
YOUR CHAPTER CHAIR
•
To the Volunteers
The final set of thank you letters is to the volunteers who participated in the event. Either
a formal letter from Osteoporosis Canada or a personal note is appropriate.
Evaluation of the Training Session and of the Advocacy Day
The evaluations will help to gather information regarding the effectiveness and success
of the training and the meetings. The advocacy day should not be a one-time event, but
rather a project that occurs regularly, yearly if possible. The evaluation should be used
to help improve the event every time it is run.
Sample evaluations of a training session and an advocacy day are provided below.
These can be modified or expanded to suit your particular event or to gather additional
information, if desired.
Sample Evaluation of a Training Session (Appendix 17)
Evaluation of Training Session
(Please rank by circling your answer.)
The Importance of Advocacy
By NAME OF PRESENTER
As preparation for the
Advocacy Day meetings
this session was
Not helpful
Somewhat helpful
Very helpful
Presentation was
Too fast
About right
Too slow
Content was
Poorly organized
Adequately organized
Well organized
Session length was
Too long
About right
Too short
Handouts were
Not useful
Useful
Very useful
As a result of this training session, I felt more confident and prepared when attending my meetings:
NOT AT ALL
SOMEWHAT
GREATLY
1
2
3
4
5
I made use of the information presented when attending the meetings:
39
February 2006
NOT AT ALL
1
2
SOMEWHAT
3
GREATLY
5
4
The most important idea I learned during this session was: ____________________________
___________________________________________________________________________.
What I would like to see improved in this training session: _____________________________
___________________________________________________________________________.
General comments: ___________________________________________________________
___________________________________________________________________________.
The Issues and Solutions
By NAME OF PRESENTER
As preparation for the
Advocacy Day meetings
this session was
Not helpful
Somewhat helpful
Very helpful
Presentation was
Too fast
About right
Too slow
Content was
Poorly organized
Adequately organized
Well organized
Session length was
Too long
About right
Too short
Handouts were
Not useful
Useful
Very useful
As a result of this training session, I felt more confident and prepared when presenting our key messages:
NOT AT ALL
1
2
SOMEWHAT
3
4
GREATLY
5
The background information proved useful when attending the meetings:
NOT AT ALL
1
2
SOMEWHAT
3
4
GREATLY
5
The most important idea I learned during this session was: ____________________________
___________________________________________________________________________.
What I would like to see improved in this training session: _____________________________
___________________________________________________________________________.
General comments: ___________________________________________________________
___________________________________________________________________________.
Finding Your Way
By NAME OF PRESENTER
40
February 2006
As preparation for the
Advocacy Day meetings
this session was
Not helpful
Somewhat helpful
Very helpful
Presentation was
Too fast
About right
Too slow
Content was
Poorly organized
Adequately organized
Well organized
Session length was
Too long
About right
Too short
Handouts were
Not useful
Useful
Very useful
As a result of this training session, I could find my way around the Parliament Buildings with ease:
NOT AT ALL
1
SOMEWHAT
3
2
GREATLY
5
4
What I would like to see improved in this training session: ______________________________
____________________________________________________________________________
Signed (optional): ______________________________________________________________
Sample Evaluation of an Advocacy Day (Appendix 18)
Evaluation of Advocacy Day
(Please rank by circling your answer.)
Number of meetings attended: _____. I felt this was
TOO MANY
ABOUT RIGHT
TOO FEW
Did you feel that the number of people representing Osteoporosis Canada for each meeting was:
TOO MANY
ABOUT RIGHT
TOO FEW
Did all those attending the meeting have an opportunity to speak?
YES
SOMEWHAT
NO
Were the right people at the right meetings?
YES
SOMEWHAT
NO
I felt that those I met with were responsive to the presentation:
NOT AT ALL
SOMEWHAT
GREATLY
41
February 2006
Were there any questions that you could not answer?
______________________________________________________________
______________________________________________________________
_______________________________________________________________
Do you feel that the “leave behind” packages were useful?
YES
SOMEWHAT
Do you feel we achieved our objectives?
• Raising awareness
• Introducing Osteoporosis Canada
• Presenting our issues of concern
NO
YES
YES
YES
NO
NO
NO
Did you enjoy the day?
YES
NO
I would be interested in helping out with this event again in the future.
YES
NO (If yes, please sign your name below.)
If not, please elaborate: ____________________________________________
_______________________________________________________________
Anything else you want the organizers to know: _________________________
_______________________________________________________________
Suggestions for future advocacy days organized by Osteoporosis Canada or its chapters or divisions
across Canada: ___________________________________________
________________________________________________________________
Thank you for your help and participation!
Signed (optional): ___________________________________________________
42
February 2006
This is Just the Beginning
Beyond the Parliament Buildings
The advocacy day is simply the beginning of a relationship between your chapter and
government decision-makers. Advocacy is an ongoing process and follow-up activities
are crucial to maintaining and building that relationship in order to move forward with
solving the osteoporosis issues. We should be involved in different advocacy efforts year
round. The following provides suggestions for further involvement in the advocacy
process. Anyone willing to carry out these activities in the name of Osteoporosis Canada
must receive training in the organization’s approach.
Organizing Meetings at the Community Level
Volunteers can continue with the process at the community level. Volunteers can write to
their local elected representative or MP and request a meeting for when they return
home to the constituency. This can provide an opportunity to reach elected
representatives who were unavailable the day of the event or to update those who did
meet with members of Osteoporosis Canada before.
The Sample Letter to Representative in the section on Contacting Your Provincial
Government can be modified to suit this purpose. As well, it may be helpful to provide
volunteers with extra elected representative packages and recent newsletters. If
possible, provide volunteers with an update on any progress made since the Advocacy
Day.
Involving Decision-Makers at Osteoporosis Canada Events
Events such as the Bone China Tea and volunteer appreciation events are excellent
opportunities to involve elected representatives with the osteoporosis community in their
constituency. Once again, events like these help keep osteoporosis in the minds of
decision-makers and allow them to see the influence of osteoporosis in their community.
Attending Pre-Budget Hearings
The Ministry of Finance, or Treasury Board, conducts pre-budget hearings to gather
information on the public’s current concerns and areas of interest. Your chapter
volunteers and staff can request to speak at these hearings either to introduce a new
issue or to support or oppose a current proposal. If it is not possible for someone from
the osteoporosis community to attend because of limited time or room, you can still
contribute a brief, which will be reviewed.
For information on how to attend a pre-budget hearing, please refer to the Provincial
Ministry of Finance or web site of the ministry conducting the hearing.
43
February 2006
Attending Legislative Committee Meetings
A bill must pass three readings before it can become law. In the second stage,
legislative committees are formed to review the bill and gather public opinion on the
matter. Osteoporosis Canada chapter volunteers and staff can request to address the
committee either to show their support or to oppose the bill.
For more information on how to attend a legislative committee meeting, visit the web site
of the ministry developing the bill.
Stakeholders Lockup
Stakeholders (i.e., members of the public) and the media are invited to attend the
release of the budget. Each is seated in a different room and provided with a brief
summary of the budget and its implications. Once the budget is released, the media
members approach the stakeholders for their reaction to the budget and their
impressions of its implications.
This is an opportunity for members of Osteoporosis Canada to raise awareness of how
the government’s actions affect those living with serious health issues such as
osteoporosis.
Awareness Event
Your Advocacy Day can be supplemented and enhanced by an awareness event where
permitted:
• A legislative breakfast featuring a speaker, perhaps a person living with
osteoporosis talking about the impact of the disease on their life, or a medical
professional discussing a new development
• A display in the legislative building staffed by a volunteer to answer questions and
hand out literature
• A display featuring a volunteer doing height measurement, since loss of height is
one possible indicator of osteoporosis
• A display with a video monitor running one of OC’s videos – BoneSmart, Mending
a Fractured Future, The Silent Thief
• A mail drop to each MPP/MLA on the day of the event with information about
osteoporosis
Letters and Letter Campaigns
An effective way for an individual to be involved in organized advocacy is with a letterwriting campaign that lets the elected representative know exactly how you feel about a
specific issue. The impact can be powerful – governments consider each personal letter
they receive to represent the views of 30 to 40 people. Bring together a group of people,
and keep the following points in mind:
• Set specific objectives for the group. Decide what primary outcomes you want to
achieve, such as:
o Influence the government to make osteoporosis a priority
44
February 2006
•
•
•
•
•
•
•
•
•
•
•
o Gain unrestricted access to new osteoporosis medications
Develop key messages that everyone in the group will use in their letters. The
messages should reflect the objectives, but the impact comes from an individual’s
personal story. Make it yours; make it real.
Work in a group to achieve a consensus but avoid using form letters. Politicians
discount form letters because they look too staged, too easy for people to sign
without putting in any effort. Everyone should write a personal letter based on the
agreed-upon messages. Do not hesitate to draw on your own experiences. Let
the emotion you feel about the issue come through – it will underscore the
importance of the issue.
Back up the argument with some statistics and research. A simple example would
be to quote your physician (with permission) or a doctor who has spoken out
about the issue. Or quote an article you may have saved from a newspaper or
magazine. You could include information from your own newsletter, or from
Osteoblast or Coping. Facts and opinions help the politician further understand
the widespread effects of the problem.
Ask for a specific action in your letter. For example, ask your elected
representative to express his or her support for your issue or cause publicly and
to seek the support of his or her colleagues in caucus. Whenever possible,
suggest in your letter specific wording for an expression of support.
Set a deadline in your letter for your elected representative to take some action.
Indicate that you would like to report his or her position back to your organization
the next time you meet, and give a specific date.
Ask for a formal, personal response from the elected representative and when
you get one, share it with your group.
Set a deadline for everyone in the group to write their letters.
Make sure everyone has the correct names and addresses of the elected
representatives you are trying to influence. Send your personal letter to your
representative’s constituency address, but make sure it is marked “personal.”
Schedule your letter-writing campaign for greatest possible effect. A particularly
good time is before or after an election. However, the timing can also be tied in to
such local events as fundraisers, community awareness days and civic
celebrations and activities – anywhere a politician might like the opportunity to go
on record in front of a group as being a supporter of your organization. If you
have an important issue to highlight, don’t wait – act now!
Follow up your letter with a phone call to the representative’s office to make sure
it was received, to increase the representative’s awareness of the issue, and to
reiterate the need for action. If the response you receive is inadequate or slow in
coming, begin a follow-up letter-writing campaign. If, however, you do get
responses and action, be sure to take the time to formally thank the
representative, in writing, for their efforts. This thank you could also occur more
publicly, at a chapter event or a media event such as a press conference.
You can also use opposition members to table letters in the legislature, which will
record them in Hansard (the written proceedings of the legislature) and to raise
questions about your issue.
45
February 2006
Petitions
A petition is the simplest way for a lot of people within and beyond your group to make
their concerns known. Governments will usually only accept a petition when it meets
certain accepted formatting criteria. To prevent your petition from being rejected on
technical grounds, make sure you:
• Put the word PETITION at the top of each page.
• Outline the concern in about 50 words, using simple, clear language. Then, in
about half the number of words, suggest what action you want your government
to take. Use “I” – first person singular; a petition is not a group statement.
• Place these statements at the top of every page of the petition and format every
page identically, using three columns below the text:
o One column for petitioners’ names (when soliciting names, ask people to
print their name in full and avoid initials).
o One column for signatures.
o One column for mailing addresses. Phone numbers should not appear.
Nothing else should appear on a petition.
The most effective way to deliver a petition is to a non-cabinet MPP/MLA. Give the
politician the original petition and keep a copy for your records. Include a brief covering
letter thanking the representative for accepting the petition and suggesting a date by
which members of the osteoporosis community and government representatives should
meet to talk about it.
Ask for your petition to be tabled in the legislature. This will put it on public record and
identify it in Hansard. When the petition is read into Hansard, it also ensures that you will
receive a public response from the Minister.
Ongoing Contact
Take advantage of opportunities to keep osteoporosis, Osteoporosis Canada and your
chapter in the foreground of the government’s attention, for example by:
• Sending to the Health Minister articles or abstracts as they appear in the medical
literature, Osteoporosis Update, or other reputable journals
• Sending Osteoblast on a regular basis
• Complimenting the government when they have done a good job, perhaps by a
follow-up post card
• Responding to government surveys on issues related to osteoporosis
• Continuing to visit your key contacts
• Attending community events held by the representative, for example a New
Year’s levee
• Attending other community events at which the representative might appear
• Inviting the representative to chapter events, for example a Bone China Tea or
public forum
46
February 2006
Appendices
The Appendices contains all of the sample questionnaires, letters and forms found in the
text. They are intended for your use – to be modified and reproduced to suit the needs of
your particular event. They will look good on your Chapter letterhead, and don’t forget to
delete the title from the document when you use it!
1. Sample Questionnaire for Participation in Advocacy Day
2. Sample Introductory Letter to the Osteoporosis Community
3. Sample Questionnaire
4. Sample Memorandum Inviting Participation
5. Sample Questionnaire for Participants
6. Sample Confirmation Letter
7. Sample Letter to Representative
8. Sample Phone Log
9. Sample Issues Sheet
10. Sample Background and Solutions Sheet A
11. Sample Background and Solutions Sheet B
12. Sample Agenda for the Meeting
13. Sample Visit Report
14. Sample Training Agenda – Speaker’s Version
15. Sample Training Agenda – Participant’s Version
16. Sample Thank You Letter to Representative
17. Sample Evaluation of a Training Session
18. Sample Evaluation of an Advocacy Day
Acknowledgements:
This Manual was complied primarily by Tanya Long, Education and Volunteer
Coordinator at Osteoporosis Canada, with content from ALS Canada’s advocacy manual
and an earlier Osteoporosis Canada advocacy manual by Trish Bayne of the Alberta
Chapter of Osteoporosis Canada. Reviews and feedback were incorporated from
Osteoporosis Canada staff and volunteers, including:
Karen L. Ormerod,
Kelly Mills
Sally Thomas
Marg MacDonell, and COPN Steering Committee
Advocacy consultant Ryan Clarke, LL.B. of Advocacy Solutions also reviewed this
Manual.
Advocacy Manual February20 2006.doc/Advocacy/kmills
February 20, 2006.
47