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61. Abma TA. Patient participation in health research: Research with and for people with spinal cord injuries. Qual Health Res 2005;15(10):1310.

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A core feature that characterizes research from a patient’s perspective is the fact that research questions are derived from the experiences of patients. Research from the perspective of patients, furthermore, means that patients are engaged as “partners” (vs. information givers) in the process.


In this study the preferences for research from the perspective of people with a spinal cord injury were part of a study in which the Dutch Spinal Cord Injury Association was engaged in a dialogue with researchers in the field to develop a new research agenda. 

Good practices 

By creating a dialogue between patients and researchers. Patients should be involved as active and equal partners in this process. Before this dialogue takes place the stakeholders should have the opportunity to articulate their ideas and priorities first. This can be done through various methods: ranging from in-depth interviews, brainstorming sessions, and discussion meetings to focus groups. Special attention needs to be given to power relations; one should give a voice first to the people who are least powerful.

62.  Epstein S. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology & Human Values 1995;20(4):408.

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This article examines the mechanisms or tactics by which lay activists have constructed their credibility in the eyes of AIDS researchers and government officials. 

Good practices patient advocates 

  • Construction of scientific credibility. 

  • Establishment of themselves as representatives of patients.

  • Combine methodological and moral arguments. 

  • Taking on sides in pre-existing debates.


Author argues that successful lay incursions into biomedicine have considerable implications for the understanding of such broad phenomena as the cultural authority of science and medicine the public reception of scientific claims, the boundaries between science and society, the relationships between doctors and patients and the tension between expertise and democracy within complex and differentiated societies.

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63.  Boers M, Brooks P, Simon L, Strand V, Tugwell P. OMERACT: An international initiative to improve outcome measurement in rheumatology. Clin Exp Rheumatol 2005;23(5):10.

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64. Tugwell P, Boers M, Brooks P, Simon L, Strand V, Idzerda L. OMERACT: An international initiative to improve outcome measurement in rheumatology. Trials 2007 Nov 26;8:38.

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OMERACT is the acronym for an international, informally organized network initiated in 1992 aimed at improving outcome measurement in rheumatology. Chaired by an executive committee, it organizes consensus conferences in a 2-yearly cycle that circles the globe. Data driven recommendations are prepared and updated by expert working groups. Recommendations include core sets of measures for most of the major rheumatologic conditions. Since 2002 patients have been actively engaged in the process.

Website OMERACT: 

65. Terry SF, Terry PF, Rauen KA, Uitto J, Bercovitch LG. Science and society: Advocacy groups as research organizations: The PXE international example. Nature Reviews Genetics 2007;8:157.

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This article gives an overview of the history of patient organisations, and a list of examples of patient organisations who participated in research. It then discusses the example of PXE international and the approaches they use to bring the PXE community together with research scientists to accelerate translational research.

Good practices PXE International 

PXE International established a Blood and Tissue Bank. Brought clinicians from various disciplines together in meetings. Founders of PXE International worked with scientists to discover and patent the PXE-gene: ABCC6 in 2000. They also helped developing a genotype-based diagnostic test and licensed the patent to a company called Transgenomic. Finally, PXE International has conducted clinical studies where lay people and researchers collaborated. PXE international now educates and helps other patient organisations. Together with the genetic alliance they published the Interactive Guide to Building Advocacy Organizations.

Website PXE international: 

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66.  Thornton H. Patients and health professionals working together to improve clinical research: Where are we going? Eur J Cancer 2006 Oct;42(15):2454-8.

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Good practices CAG-CT

Author was part of working group CAG-CT (Consumers advisory group for clinical trials) which consisted of 4 patients and 4 health care professionals. They successfully applied for funding from NHS with a project on HRT in women with early stage breast cancer that used focus groups to identify and prioritise outcomes patients, clinicians and researchers wanted. They also identified specific training needs for those who conducted the trial and met information needs of participants. 

Many models on patient involvement are available on the database of INVOLVE. The UK leads the way in promoting collaboration in research. Within the James Lind Alliance this collaboration can be extended by patient organisations and clinician organizations working together.

Website INVOLVE: 

67.  Wong DK, Chow SF. Beyond clinical trials and narratives: A participatory action research with cancer patient self-help groups. Patient Educ Couns 2006 Feb;60(2):201-5.

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68.  Caron-Flinterman JF, Broerse JEW, Teerling J, van Alst MLY, Klaasen S, Swart LE, Bunders JFG. Stakeholder participation in health research agenda setting: The case of asthma and COPD research in the Netherlands. Science and Public Policy 2006;33(4):291-304.

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Authors aimed to assess the ability of Asthma and COPD patients to prioritize research in a well-argued way.


The consultation procedure successfully elicited patients' research priorities including the underlying arguments. Our results indicate that asthma and COPD patients are capable of research prioritization in a well-argued way and that they highly value biomedical research. 

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