Health research: power differences

Power differences can prevent close cooperation between various parties working on a transition. It takes time to overcome power differences and the process must be carefully designed. Here we describe an example of how to deal with power differences from the Athena Institute of the Vrije University in Amsterdam. It concerns a project designed to produce an innovative health research agenda that incorporates the priorities of patients.

 Background

Health research in the Netherlands is financed from various sources, including the Asthma Fund and the Heart Foundation. Scientific experts usually determine the agenda. Their priorities are dictated by the desire to understand the mechanisms of diseases and to improve treatment. Research scarcely ever reflects other issues that are relevant for patients - or their families.

 Issues that matter

For example, the agendas for research into chronic diseases seldom address issues concerning the everyday functioning of people who are sick or the integration of physical, mental and social aspects of a disease. There is also little attention to differences between patients with the same disease, prevention or the implementation of new knowledge.

Change is needed

But Dutch patient organisations are becoming more articulate. And the Dutch organisations that finance research are becoming more sensitive to claims that input from patients could lead to better innovations from the patient's perspective.

Research

Against this background, the Athena Institute investigated how patients could provide more input for the research agenda. One aspect the researchers focused on was how to design the process in such a way as to equalise the anticipated power difference between scientists and doctors (regime players) on the one hand, and patients and their families (innovative niche players) on the other. Those power differences are connected with the social status of the two groups but also with differences in the value that people attach to their knowledge. They constitute an obstacle to producing a shared, innovative research agenda.

Process design

Janneke Elberse and her colleagues evaluated a project designed to broaden the research agenda concerning congenital heart problems. The process was designed on the basis of previous experience with interaction between powerful and less powerful actors. It involved four phases: the preparation of meetings, separate consultations with the stakeholders, integration and prioritisation of agendas, and evaluation.

Dialogue workshop

As part of the third step of integration and prioritisation, the researchers organised a dialogue workshop. The workshop was designed to eliminate power differences as far as possible. For example, the meeting was held outside the hospital (the terrain of the doctors), there were more patients and family members than doctors, all the participants were treated with equal respect and doctors and patients all had badges with their first name and surname. The chairman of the session also ensured that the patients had sufficient opportunity to provide input and the meeting started with the views of the patients.

Exclusion mechanisms

But when groups of doctors and patients discussed how to translate the perspectives into research questions, annoying power differences appeared in the shape of exclusion mechanisms. Experts were quick to describe the personal experiences of laymen as subjective. Also, they quickly rejected the subjects that the lay people suggested for research. This happened without asking themselves whether their conclusion was actually correct. The doctors also grouped together against the patients, so that patients needed considerable assertiveness to surmount that barrier.

In the afternoon, the doctors dominated the discussion even more when the doctor giving a presentation of the experts' perspectives introduced a new subject. The lay people remained silent, but embraced the overarching theme. As a result, their subjects were given a lower priority. With hindsight, it turned out that not everyone was clear what the topic involved and that many of the lay participants had allowed themselves to be browbeaten.

Adaptations in the design

The VU then decided to organise separate meetings for the experts and the lay people. During the preparatory meetings they explicitly invited the participants to reflect on their own perspectives and opinions. But that did not remove all the obstacles to producing an innovative research agenda. For example, in the follow-up to earlier attempts to expand the agenda it emerged that almost all of the patients' research priorities had disappeared in the final research programme. The decision makers felt that the scientific quality of the subjects raised by the patients was sub-standard. Or they did not know any researchers who could translate those subjects into good research. Once again, the old regime (with networks, perceptions) had come to the fore. The researchers therefore called for the financiers of research to look more actively for researchers outside the usual disciplines. They also decided to make experts more sensitive to the benefits of patient participation by highlighting it more in publications and at scientific conferences.

Sources

Elberse, J.E., J.F. Caron-Flinterman, J.E.W. Broerse (2011). Patient-expert partnerships in research: how to stimulate inclusion of patient's perspectives. Health Expectations 14 (3), pp. 225-239.