Defining vulnerable populations and patient representation – a consumer perspective
Identifying vulnerable populations within a group of conditions as vast as arthritis where people are affected from birth to the grave is difficult but not impossible.
The rates of arthritis disease are much higher in the aboriginal population than the general population. Children with juvenile inflammatory arthritis (JIA), the most prevalent chronic disease of childhood, and others with rare types of arthritis where there is little targeted research funding, can be listed in the vulnerable population category. Vulnerable too are those living in rural Canada, where access to quality health care is a major challenge. Seniors with most forms of chronic disease are considered vulnerable particularly those without access to family, friends and transportation, regardless of where they live. The can be virtually house bound, alone and lacking the impetus to seek regular care.
Vulnerable populations are people from any socio-economic level, but particularly with lower socio-economic status. They are members of any chronic disease group who can no longer function at full capacity, with the same earning power, the same level of physical and mental activity and the same access to health care, services, education, and social support networks as other members of society. Many people with inflammatory arthritis, disabled as a result of their disease, would be within a heartbeat of slipping into a lower socio economic designation if it weren't for the support of family members and friends. As a result of their disease, they are a heartbeat away from slipping into the lower socio economic status designation.
Because there is a lack of awareness of the impact and burden of arthritis on both the individual with the disease and society, and because there is inadequate arthritis research funding to address the coming epidemic of arthritis, all people with arthritis could be deemed members of the vulnerable population. There is virtually no funding for Lupus, Scleroderma, Vasculiits, Myositis or Sjogren's disease. Ninety per cent of people with these forms of arthritis are women. There is even less research funding for children with JIA. More research dollars were spent on cancer research in one year than arthritis research in the last 8 years even though there are close to 5 million people with arthritis in Canada.
It is often assumed that because we are all sometimes patients - whether with flu, diabetes or arthritis - that anyone can represent both the public and patient and/or health consumer population. But there is a vast difference between someone who has a cold and sore throat for seven to 10 days and someone who lives with a disabling chronic disease every minute of every day. The knowledge and experience that comes from dealing with the healthcare system, the workplace, the social welfare system and the disease itself in an effort to obtain care, services and appropriate treatment is critical to the understanding and identification of challenges and issues. It takes this understanding to be able to represent a specific disease population. When we constantly interact with many others in a disease specific group our experiences are shared and our knowledge is pooled. We can and do speak with expertise and authority on behalf of others with arthritis
Representing the vast population of Canadians who at some time have reason to access the health care system seeking treatment is a privilege and an enormous responsibility. Because there is such diversity of need, a reasonable approach is to recruit representatives who are knowledgeable and experienced individuals within specific disease groups who are best able to inform decision-making proposals related to specific diseases. This would also help identify vulnerable individuals as well as vulnerable populations within geographic or disease areas. It would also assist in:
- ensuring the episodic nature of some chronic diseases is recognized,
- emphasizing that vulnerability means many different things, from the ability to understand and make decisions, to the ability to live unassisted,
- stressing that vulnerability may be a permanent, a re-occurring or a fleeting condition.
Are you or someone you know a 'vulnerable person'?