Arthritis health care: Are you playing or passing the ball?

Have you heard the expressions “participating in your care” or “participating in health care”? Do you know what they really mean? Both are about becoming more involved in health. But the first expression is about taking an active role in your own health, such as, looking for information about your health condition, speaking to your doctor about it, and making your own lifestyle changes. The second, however, is about being active in the health care system and in decisions that affect the health of your community, your province or even your nation. This could be speaking to your Member of Parliament about ways to shorten waiting lists or joining a committee to decide what arthritis research to fund or a committee of a local hospital to decide what services to provide and how.

It’s a bit easier to see how you could participate in your own care. But participating at a health care system level - are there really opportunities to do that? Yes. There are very active, and sometimes overworked, members in CAPA taking advantage of such opportunities. Increasingly, there are research institutes, university bodies and government funded organisations looking for people with arthritis to participate on their boards and committees.

But do consumers really provide anything valuable to these committees? Yes. Consumers are the voice of those living with arthritis every day and of those directly affected by system and policy decisions. Consumers help ensure research asks important questions and that the results reach the public. They have the potential to ensure more accessible and acceptable health services, and ultimately improve health and quality of life.

Really? Yes. Some CAPA members and members of the Consumer Advisory Council of the Canadian Arthritis Network (CAC-CAN) act as advisors and collaborators on arthritis research, and are reviewers who help decide what research is funded by CAN. Patient participation is considered so important by CAN that all CAN research must have patients actively involved. People with arthritis are also members of the Cochrane Musculoskeletal Group (CMSG). The CMSG writes reviews about the effects of treatments for arthritis, for example, does Enbrel work and is it safe? Consumers help decide what treatments are reviewed and help ensure that the reviews address the concerns of people with arthritis. Arthritis consumers were also, for the first time, expert members of Health Canada's Expert COX-2 Panel in 2005. They provided their views about the potential risks and benefits of COX-2s in order to make recommendations for the use of COX-2s to benefit patients across Canada!

Some other examples: Members of CAPA participated in the COMPUS workshops held across Canada in 2004. COMPUS is an initiative from CADTH to ensure health care providers prescribe, and consumers use drugs according to best practices. Partially because of the impressive participation of the consumers, we were invited to attend and present at the CADTH Invitational Symposium in April 2006 about Consumer involvement in decision making for health care policy and planning. There we spoke to the 'movers and shakers' and to individuals on the front lines of health care. From this, CAPA was invited to contribute comments to the Patented Medicine Prices Review Board consultations on the Board's Excessive Price Guidelines, [http://www.pmprb-cepmb.gc.ca/english/View.asp?x=741&mp=647]. Our presentation also led directly to Anne Dooley being asked to participate in a study surveying scholars, representatives of HTA agencies, and representatives of health consumer groups to explore the factors that influence the adoption of public participatory models of health technology assessment in Canada, Denmark and the United Kingdom.

Interest and opportunities are increasing on the research and decision maker side! Now we need more consumers to participate. If you’re interested in learning more, in voicing your opinions or in ensuring accessible and quality health care services for people with arthritis, contact CAPA through editor@capa.ca . You can help!