New recommendations from the European League Against Rheumatism provide structure to the growing practice of including patient representatives in research projects.
The recommendations should be useful not only within the European League Against Rheumatism (EULAR) but also to other medical researchers, Maarten P. T. de Wit of Vrije Universiteit Medical Centre, Amsterdam, and his associates reported. EULAR convened a 16-member task force that crafted eight recommendations to promote inclusion of the patient perspective in EULAR-funded scientific research.
Their paper was published online in advance of publication in Annals of the Rheumatic Diseases (doi:10.1136/ard.2010.135129).
Some previous reports suggest that the benefits of including patient representatives in research outweigh the drawbacks. Although including one or more patient representatives has become "usual practice" in EULAR scientific projects, the League’s standardized procedures previously have not described how best to do this, the task force said.
They defined patient research partners as "persons with a relevant disease who operate as active research team members on an equal basis with professional researchers, adding the benefit of their experiential knowledge to any phase of the project."
Including patient research partners can help prevent mismatches between patient preferences and the focus of research, lead to more patient-oriented research agendas, empower patients, and build trust between patient organizations and medical institutions, data suggest.
The task force of three rheumatologists, one rheumatologist/epidemiologist, two allied health professionals, two research organization representatives, and eight patient research partners from six countries reviewed the literature and met twice to develop the recommendations, which were then evaluated by 28 patient representatives and 53 health professionals.
First, the task force strongly recommended that clinical researchers and groups that are developing guidelines or recommendations work with patient research partners, and that other researchers consider patient participation. Patients’ experiential knowledge is important even for laboratory-based research, and researchers who do not include patient partners should justify that decision, they said.
Second, patient participation should be considered for all phases of a research project and is essential in the early stages of research when critical decisions about the protocol and project are made. If this recommendation is not followed, investigators should explain why when publishing results. The group of experts that reviewed the recommendations diverged a bit in their approval of this recommendation, with 27 of 28 patients (96%) agreeing with it compared with only 43 of 53 professionals (81%).
Third, each project should include at least two patient research partners. There’s no solid evidence to support this, but it adds to the team’s diversity and supports the patient partners, and provides a substitute if one patient is absent due to rheumatic illness. This recommendation also drew more support from patients in the group of experts, winning agreement from 26 patients (93%) compared with 36 professionals (68%). Rates of agreement on the other recommendations did not differ significantly between patients and professionals.
Fourth, give potential patient research partners a clear description of the minimum requirements for the position and clarify the roles of the patient partners and the principal investigator.
Fifth, take into account the patient’s communication skills, motivation, and attitude when selecting patient research partners. Having a critical but constructive and proactive attitude is ideal. Academic training is not necessary and a medical background might even be undesirable, though some familiarity with medical terminology helps. "Thinking like an outsider is crucial to provide experiential knowledge," the task force said.
Sixth, a good attitude, good communication, and good support from the principal investigator are crucial for the full participation of patient partners. These skills to create a safe and respectful environment for patient partners may not come naturally to researchers, who should learn these skills or get training.
Seventh, give patient partners the information and training they need to participate, including awareness of ethical issues such as confidentiality, privacy, and legislation.
Eighth, recognize the contributions of patient research partners, which is usually voluntary work.
Research teams that incorporate these recommendations should evaluate the barriers to their implementation and the benefits of working with patient partners to add to the meager literature on these subjects, the task force said.
The authors reported having no relevant conflicts of interest.