JointHealth™ insight   May 2005

This issue of JointHealth™ monthly highlights the upcoming Summit on Standards for Arthritis Prevention and Care, November 1-3, 2005. This issue not only explains what the Summit is about but also talks about how you can get involved as a person living with arthritis or osteoporosis.


Summit on the Standards for Arthritis Prevention and Care (by the Alliance for Canadian Arthritis Program)

Bringing together arthritis knowledge and action

Groundbreaking Arthritis Summit, November 1-3

This year will be remembered as a significant milestone for Canadians with arthritis, as decades of research and evidence are translated into a definitive plan of action.

This fall, the Summit on Standards for Arthritis Prevention and Care (SAPC) will bring together representatives from throughout Canada's arthritis community - including formal and informal care givers, health care providers, government (federal and provincial), arthritis researchers and clinicians, voluntary associations, the pharmaceutical industry, and people with arthritis - to develop definitive national standards for arthritis prevention and care.

The Summit will take place November 1-3, 2005, at the Chateau Laurier in Ottawa.

Approximately 250 participants will take part, bringing together the collective knowledge and commitment of the arthritis community, to consolidate thoughts and ideas and to move forward cohesively and effectively.

The overall objective of the Summit is to come up with concrete, clear and definitive recommendations for government - pragmatic, actionable, evidence-based standards for arthritis prevention and care.

A Planning Committee, made up of representatives from a wide cross-section of arthritis groups in Canada, has been formed to develop the format, structure and content for the Summit, and to determine the Summit's participants. More than ever before, people with arthritis will be strongly represented, in planning, attending and promoting the Summit, and in helping to shape its recommendations.

SAPC will be the culmination of "Rock This Joint 2005 - Bringing Together Arthritis Knowledge and Action," an initiative that will see eight days of high-level arthritis meetings in Ottawa this fall. In addition to the Summit, "Rock This Joint" includes the Bone and Joint Decade World Network Conference (October 27-29) and the Canadian Arthritis Network's 5th Annual Scientific Conference (October 29-31).

"Rock This Joint" is an initiative of the Alliance for the Canadian Arthritis Program (ACAP). ACAP was formed two years ago, when the organizations working to help people with arthritis live better lives joined together. More than 30 organizations are involved, and while each group continues its own work, ACAP provides a central focus for all arthritis-related initiatives.

While "Rock This Joint" will culminate with the Summit, it will be no means end there. ACAP is committed to following through on the standards - continuing to work with government to ensure their implementation in the months and years ahead.

The "facts" about the Summit on Standards of Arthritis Prevention and Care

Date: November 1-3, 2005
Location: Ottawa (Chateau Laurier)
Number of Summit Participants: Approximately 250
Representation: A broad cross-section of groups and organizations that make up the arthritis community, including:
  • people with arthritis
  • formal and informal care givers
  • health care providers
  • government - federal and provincial
  • arthritis researchers and clinicians
  • voluntary associations
  • pharmaceutical industry
Purpose of the Summit:
Through consensus involving all stakeholders, set evidence-based national health system standards for arthritis prevention and care, to ensure optimal arthritis care for all Canadians.

Summit Goals:
The Summit will bring together the broadest possible group of arthritis stakeholders to:
  • review and present the evidence for care at all levels, including access, costs and quality of care;
  • make evidence-based recommendations to federal, territorial and provincial governments;
  • identify barriers to care and develop strategies to overcome them; and
  • where evidence is inadequate, establish an agenda to drive development of additional standards, and to guide priorities in arthritis research in Canada.
Summit Planners:
The Summit on Standards for Arthritis Prevention and Care is an initiative of the Alliance for the Canadian Arthritis Program (ACAP). ACAP was formed in 2003, when the organizations working to help people with arthritis live better lives joined together. More than 30 organizations are involved, and while each group continues its own work, ACAP provides a central focus for all arthritis-related initiatives.


Have your voice heard at the Summit
To prepare for the Summit on Standards for Arthritis Prevention and Care, the Planning Committee identified nine priority standards for development. These fall into three themes: Prevention, management and models of care, and awareness.

Themes Priority Standards Areas
PREVENTION 1. Physical activity
2. Injury Prevention

3. Access to a Diagnosis
4. Manpower and Models of Care
5. Access to Medications
6. Access to Surgery
(information, education, communication)
7. Participation
8. General Public and Arthritis Consumer
9. Health Professionals Education

Each standard developed at the Summit will consider the needs of different arthritis population groups across Canada.

To help Summit planners understand what is actually happening to people with arthritis and osteoporosis out in the community, ACE asks you to think about the priority standards outlined above and tell us your thoughts on the following:
  • What do you want to know about preventing arthritis and osteoporosis;
  • How long you waited to be referred to a rheumatologist or other medical specialist;
  • What was your experience getting medical information about your disease once you were diagnosed;
  • What challenges did you face getting access to the medication prescribed to you;
  • How long you waited for joint surgery.
By sharing your personal experience, consumers and patients, health care providers and government who attend the Summit will be able to consider what happens in "real life" when developing standards for arthritis prevention and care. To share your story, click here and type in the subject bar "My thoughts about the Summit".

Thank you for taking the time to have your voice heard at the Summit.


Spring 2005 Workshop Update

Thanks to your great participation, the ACE Spring 2005 Workshops have been a huge success.

Approximately 700 people with arthritis and their family members attended workshops. The workshops focused on rheumatoid arthritis, ankylosing spondylitis, osteoarthritis and osteoporosis and were held in the following cities:
  • Saskatoon (SK)
  • Burnaby (BC)
  • Sherbrooke (QC)
  • Nanaimo (BC)
  • Calgary (BC)
  • Lethbridge (AB)
  • Abbotsford (BC)
  • Montreal (QC)
  • Kelowna (BC)
  • Quebec City (QC)
  • Edmonton (AB).
At the end of each workshop, a complete evaluation of the presenters, as well as the workshop content and venue was completed. We also asked participants to tell us in their own words what they most valued about the workshop, and invited them to offer suggestions on ways to improve future workshops.

Over ninety five percent of ACE participants said they "agreed" or "strongly agreed" that the workshop presentations and content were excellent. Even participants with arthritis for over 20 years said they learned something new. People with arthritis for just a short time appreciated the depth of information provided in the three-hour workshops. One hundred percent of workshop participants found the hour long question and answer session of highest value, and that this part of the workshop included the views and experiences of a fellow person with arthritis.

About ninety-five percent of participants rated both the medical and patient advocate speakers as "excellent". In particular, you liked hearing about the non-medical aspects of living with arthritis from a fellow person living with the disease.

The areas that workshop participants said they wanted more information on include:
  • Arthritis research
  • Specific types of arthritis and osteoporosis "friendly" exercises
  • Diet and nutrition
  • Experimental treatments
  • Complimentary and alternative treatments
As promised, ACE will provide more information on these topics in future workshops, as well as include articles on these in upcoming issues of JointHealth™ monthly.

We want to thank all Spring 2005 Workshop participants for providing us with their feedback. It is very important for ACE to hear what you think in order to provide you with the highest quality workshop program possible.

If you attended an ACE workshop this Spring and would like to give us additional feedback, please click here.

Thank you, and we hope to see you at a future workshop.


Fall 2005 Workshop Schedule

Every Spring and Fall, ACE offers free workshops in communities across Canada. These researched-based education workshops are conducted by leading rheumatologists (arthritis specialists) and patient advocates. The workshops are held at times which are convenient for people with commitments during the work week.

For further information or to register, please go to or call 1-866-974-1366.

***Please note the workshop locations will be announced in future issues of JointHealth™ and on the ACE website as they become available***

Plan to Win with Rheumatoid Arthritis (RA) workshop
These workshops provide you with the critical information you need to know to take control of rheumatoid arthritis, one of the most common forms of inflammatory arthritis. Topics covered include:
  • What rheumatoid arthritis is and about its effects
  • Developing your own customized treatment plan (health care team, medications. exercises, work)
  • Healthy living strategies
  • Access to treatment and services in your community
  • Latest arthritis research news
  • "Question and Answer" session
Charlottetown, PEI
St. John's, NB
Halifax, NS
Ottawa, ON
Sudbury, ON
Victoria, BC
Thunder Bay, ON
September 13
September 14
September 15
September 19
September 20
September 27
September 28 (F)
October 13
(F) = workshops conducted in French

Plan to Win with Ankylosing Spondylitis (AS) workshop - new
New for 2005, the Plan to Win with Ankylosing Spondylitis workshops will focus on ankylosing spondylitis, a common type of inflammatory arthritis, that commonly affects the spine and other large joints in the body.

Montreal, QC
Toronto, ON
Calgary, AB
Winnipeg, MB
St. John's, NF
Hamilton, ON
September 22
September 29
October 11
October 12
October 18
October 19

JointHealth™ workshops
JointHealth™ workshops will focus on two of the most common chronic diseases in Canada - osteoarthritis and osteoporosis. These diseases affect millions of Canadians making this a very popular workshop.

Taking an integrated approach to managing these two health challenges requires a whole-body perspective. More than ever, people need to develop a strong health care team to take advantage of all the opportunities to manage their health. These workshops will help you learn about prevention strategies and focus on what you can do to live well with osteoarthritis and osteoporosis.
Halifax, NS
Coquitlam, BC
September 17
October 6

Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Merck Frosst Canada, Pfizer Canada and Schering-Plough Canada, UCB Pharma Canada Inc. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.

ACE thanks these private and public organizations and individuals.