Patients' Priorities Concerning Health Research: The Case of Asthma and COPD Research in the Netherlands

Caron‐Flinterman et al. (2005) full text summary PDF

For which topic were research priorities identified?

asthma and COPD

In which location was the research priority setting conducted?

Europe - Netherlands

Why was it conducted at all?

Although patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision-making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long-term targets. As a result, many concluded that patient involvement in overall health research agenda setting would either be useless or result in an undervaluing and subordination of biomedical research. Until now, available literature on the subject, such as systematically reviewed by Oliver et al., hardly provides evidence concerning the tenability of above-mentioned presuppositions. Reports on patient consultations concerning research priorities often concern a restricted field of health research only, or do not distinguish patients priorities from the priorities of professionals. But even if many of the above-mentioned pre-suppositions can be substantiated, it may be unfair to conclude that patient participation in overall health research agenda setting is useless and undesirable. Scientific knowledge, for example, may not always be a necessary prerequisite for useful participation. Indeed, patients may possess other types of knowledge of value and relevance to research agenda setting, as is argued by several scholars. According to these scholars, a distortion of research priorities due to the inclusion of patients knowledge can be positive, because this broadening of prioritization can counter potential biases of scientists and health-care professionals.

What was the objective?

to gain greater insight into whether patients can prioritize health research topics in a well‐argued way and can make relevant contributions to current health research agendas

What was the outcome?

a ranking list of 15 research topics

How long did the research prioritization take?

September 2003 - February 2004

Which methods were used to identify research priorities?

focus group; meeting; survey

How were the priorities for research identified exactly?

Step 1: 7 focus groups: groups of 7 to 11 persons, patients asked to discuss disease-related problems they experience in daily life, participants were asked to collectively prioritize the listed problems by negotiation and distribution of urgency points, focus group identified specific research questions, reports of the discussions were sent to all participants for feedback. Step 2: data processing: analysis of focus groups. Step 3: meeting: additional feedback collected, resulting in list of patients' questions and suggestions for research. Step 4: survey: participants were asked to divide a maximum number of points among different wishes

Which stakeholders took part?

Asthma and chronic obstructive pulmonary disease (COPD) patients. Focus group: 61 patients: equal number of patients with asthma and patients with COPD. Meeting: 27 participants: 11 asthma patients, 12 COPD patients, 3 patients with both diseases, 1 parent of an asthma patient. Survey: 244 participants.

How were stakeholders recruited?

Survey: The questionnaire was sent to 1000 patients, randomly selected from the entire pool of NAF members, and to 42 patients who had participated in the focus groups or the feedback meeting and had indicated a willingness to participate in a questionnaire. In addition, the questionnaire was placed on the Internet site of the NAF. Questionnaires were also distributed among non-members via various hospitals, physiotherapy practices and a respiratory rehabilitation centre in Amsterdam.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.