Consumer participation in research and health care

Making it a reality

The quality and relevance of much clinical research fall short of patients' needs.1 Although there are many reasons for this, one is that clinical research has been delegated largely to the pharmaceutical industry, whose main motivation is its own economic welfare.2 Another reason is that research priorities do not flow from a transparent process where the views of all the relevant stakeholders are equally considered. With very rare exceptions—the case of the AIDS advocacy movement is an exemplar—patients and consumers have no voice in how research is prioritised, funded, and monitored. Indeed, the presence of lay people on research ethics commitees is common but there is a widespread belief that they are rarely influential.3 Even among progressive scientists and health professionals, a paternalistic attitude still prevails. They do not believe that patients and consumers can improve the decision making process as, they say, consumers lack the necessary knowledge and skills. But successful efforts to shift the balance of participation are becoming a reality, even in difficult areas such as oncology.

In March, the First International Conference on Breast Cancer Advocacy convened in Brussels, under the strong leadership of the National Breast Cancer Coalition (United States), helped by organisations such as Association Nacionale Contra el Cancer (Panama), Contre le Cancer (Belgium), Breast Cancer Care (England), Europa Donna, Israeli Breast Cancer Coalition, and UK National Breast Cancer Coalition. The main theme was how to make consumers' participation in research planning and healthcare delivery a reality. More than 250 breast cancer survivors, health professionals, and consumer advocates from 44 countries and six continents discussed for three days their own experiences and the difficulties encountered when they entered the scientific and policy making process. General issues (such as the status of breast cancer research and the biases that affect regulatory mechanisms for new drugs approval worldwide) were presented by scientific leaders. Specific workshops were organised to allow focused discussion and exchange of experiences, including consideration of how to mobilise and influence the media and how to influence legislation.

The Brussels conference was both the recognition of the success of the NBCC's Breast Cancer US Army Program4 and the starting point for creating a truly international advocacy movement for breast cancer. The NBCC is a grassroots organisation, set up in 1991 and dedicated to ending the breast cancer epidemic through action and advocacy. While NBCC has spearheaded the effort to increase federal funding for breast cancer research in the United States, one of the most important changes that the coalition has brought about is the acceptance of the idea that breast cancer survivors must have a say when policies are formed and decisions about research funding are made.

The NBCC has created an innovative model of open communication and exchange of expertise with the scientific community. Project LEAD (Leadership, Education and Advocacy Development) is a science training programme for breast cancer advocates. Project LEAD's goal is to empower activists to participate fully, however breast cancer decisions are made. Too often consumers are ill prepared or too intimidated by the process to speak up or ask questions. Project LEAD gives advocates basic scientific and leadership training so that they can effectively and responsibly influence decisions related to breast cancer research. Similar training and educational efforts to empower consumers and patients are being designed in Australia, Canada, and some European countries.

Even in Europe many research organisations are now beginning to work with patient groups that help set their agenda for future research, but there is still resistance to the idea that patients and consumers can fully participate. Some even worry that consumers will represent the views of special interest groups and could become strong lobbies easily manipulated by interested parties to advocate all care at any cost in an era where healthcare systems are struggling (at least in Europe and Australia) to be able to provide minimum necessary care to their populations.

As an international organisation putting strong emphasis on consumer participation,5 the Cochrane Collaboration also took part in the Brussels meeting, and its newly formed Cochrane Breast Cancer Review Group was able to discuss its scientific endeavour and the challenge of establishing mechanisms for creative and productive patient and consumer involvement. The Brussels conference clearly endorsed the status of breast cancer advocates as equal partners with health professionals, scientists, and policymakers in preventing the disease, improving treatment, and ensuring better quality of care. Without such a partnership—difficult though it may be—research is unlikely to become more productive or relevant. The challenge is now for the medical profession to accept this message and develop alliances with consumers to move forward toward a wider recognition of the uncertainty and weaknesses of medicine and the biases in the process of setting research priorities.6