Summary Values and Criteria of People with a Chronic Illness or Disability

The number of people in the Netherlands with an illness or disability is on the rise, and the same trend is also observed in many other European and non-Western countries. This expanding group of people has experience and knowledge about what it means to live with chronic illness or disability and about the consequences for themselves, their immediate environment and for society. This knowledge and experience, usually accumulated over the years, and in many cases in interaction with professional and even scientific knowledge, is generally referred to as experiential knowledge. With their experience and knowledge of their fellow members, representatives of people with chronic illness or disability are increasingly serving as partners in the health debate and in negotiations on health care and research. The idea behind this is that the quality of health projects improves , e.g. on guidelines or scientific research, is a better reflection of their voice, and what these people contribute leads to a much more complete picture. Moreover, this is a normative ideal involvement in quality and research and gives voice to those to whom it applies: people with a chronic illness or disability.