Building Bridges between Researchers and Patient Research Partners: A Report from the GRAPPA 2014 Annual Meeting

Building Bridges

Before the annual meeting, the patient group gathered for 1 day to finalize a 135-min session aimed at stimulating direct dialogue between all participants regarding GRAPPA’s vision and objectives for patient involvement and to advance mutual understanding of the role, interests, and responsibilities of PRP and researchers. During the plenary introduction of Building Bridges, the recommendations of the European League Against Rheumatism (EULAR) for the inclusion of patient representatives in scientific research¹¹ were presented, as well as the recommendations of OMERACT for involvement of PRP in working groups¹². The importance of clearly distinguishing the different roles of patients in the context of scientific research was stressed.

Patient roles are determined by the nature and level of involvement and can take many forms: as study subject, survey respondent, participant in an interview or focus group, advisor, PRP, or member of a steering group or committee. The research contribution is different for each patient role. In Building Bridges we specifically focused on the role of patients as collaborative partners in GRAPPA. We followed the EULAR definition of PRP 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 a research project.”¹¹ Thus, PRP are full members of the research team: they have equal opportunities to participate in the research process, receive the same information, and have full voting rights.

Of about 180 GRAPPA members who attended the 2014 annual meeting, 85 attended the 6 breakout sessions of Building Bridges, including 9 PRP (including a representative from the US National Psoriasis Foundation), 38 rheumatologists, 17 dermatologists, 17 industry partners, and 4 other professionals. Following nominal group technique, participants were asked to focus on ways to maximize patient involvement in 4 research areas: (1) revision of the core-domain set for PsA (2 groups); (2) development of a core-domain set for PsO (1 group); (3) design and conduct of clinical research (2 groups); (4) development of treatment recommendations (1 group). Most groups were moderated by PRP, assisted by physicians from the PIOMPSA initiative as reporters. The patient group distributed a breakout group guide to all moderators and reporters before the session and structured the discussions around the following key questions:

1. What are the potential benefits of structural patient participation?

2. What are the respective tasks and responsibilities of PRP and researchers?

3. What are the respective competencies required of PRP and researchers to maximize patient involvement?

4. What are the structural barriers for successful patient participation and how can these be overcome?

Because responses to the questions were similar regardless of the breakout session, the key results are summarized on the basis of the questions rather than the breakout session topics.

Potential Benefits of Structural Patient Participation

Several benefits of structural engagement with patients were discussed (Table 1). Participants stated that patient participation may resolve the established disconnect between the patients’ and physicians’ perspectives and may lead to more clinically relevant research. Characterizing the patient perspective in outcome research by collaborating with patients helps researchers understand the diverse effects of the illness on patients’ daily lives and identify their priorities for treatment options and outcomes. Focusing on real-life experiences of patients encourages healthcare services to better serve the patient community, which in turn might drive improved adherence to treatment regimens and ultimately better health outcomes. Participants also expected that patient participation would lead to more efficient use of health services, although it was recognized that more research is required here. In addition, beyond the immediate goal of promoting health research that is more relevant to meeting patients’ needs, collaborative research may improve healthcare by building increased trust between the research and patient communities and enhancing communication between patients and health professionals during consultations.

Tasks and Responsibilities of PRP and Researchers

Discussions between participants revealed the need to distinguish the role of PRP from other patient roles such as study subject, survey respondent, and interview or focus group participant. In the course of discussions on PRP tasks and responsibilities, it became clear that PRP could provide the patient perspective for different aspects of a study, e.g., they could advocate for study funding, refine research questions, participate in development of study protocols, review informed consent forms, advise on recruitment methods, contribute to the collection, analysis, and interpretation of data, and support dissemination of research findings.

Further, PRP contributions in team meetings could help physicians understand the effects of the disease on daily life and the respective needs and preferences of patients. With regard to core-set development, PRP could identify relevant domains from a patient perspective and make suggestions regarding development of appropriate measurement instruments to ensure their face validity (truth) and feasibility. In some cases, more experienced PRP could suggest specific instruments to be included in clinical trials or observational studies.

The responsibility of researchers was also discussed. Although PRP need to be involved at an early stage of a project to create a feeling of ownership and equal involvement in the project, participants realized that PRP inclusion is still a process largely dependent on physician initiative.

Physician researchers were also expected to support, facilitate, and motivate PRP, e.g., have an open mind when listening to patient stories, use plain language when explaining difficult terms or concepts, and spend time with the PRP. Physicians should contribute to PRP education by providing information and offering mentorship. In team meetings, they should actively solicit the patient perspective.

Finally, breakout group participants suggested a helpful list of competencies for both researchers and PRP (Table 2). These competencies should not be mandatory because they vary from study to study; however, they help define PRP and physician profiles for specific tasks or projects.

Challenges of Successful Patient Participation

Two challenges highlighted in the breakout groups were the recruitment of competent PRP and their representativeness of other patients with their conditions. The term “competent” referred sometimes to the ability to transcend the individual experience and to speak on behalf of the patient group. This concept is a challenging task because patient perspectives are highly individual as a result of diverse disease manifestations, variable disease duration, different levels of severity, and therapeutic responses to a wide array of agents. Also, characteristics such as sex, age, and cultural and socioeconomic background are important determinants of the patient perspective. Competence in this context means acknowledgment of one’s own limitations: 1 or 2 PRP could never represent the entire spectrum of disease effect, nor should this be their role. Instead, they should ensure the patient perspective is considered in every phase of the research process. The PRP should also ensure the project’s focus remains broader than their own disease experience. The challenge to identify the entire patient perspective is a responsibility incumbent upon the entire research team and should be reflected in the overall study design. Depending on the objective of the study, the research team may need to broaden the input from PRP or add surveys, interviews, focus group meetings, or Delphi exercises to fill gaps — or to acknowledge the limitations of studies when gaps cannot be filled¹³.

In the context of international initiatives, competence relates to the ability to speak English, to travel to meetings, and to participate in teleconferences. Participants suggested potential limitations regarding knowledge of biomedical research and the ability to contribute to research initiatives. The jargon of professionals and the use of complex statistics may hamper PRP understanding and their ability to contribute fully to discussions. The question was raised whether a scientific background or medical knowledge is advantageous for the collaborative role of patients. For some participants a minimum educational level is mandatory to contribute effectively. Others pointed out the risk of the medicalization of PRP, and advocated a rotating system to avoid patients becoming too professional, acquiring medical knowledge and aligning easily with the arguments of researchers instead of preserving a critical patient voice. One solution suggested was to strive for multiple ways to engage patients in research initiatives, e.g., to combine involvement of more experienced patients as PRP with a driving and informing role, with less experienced patients in the role of focus group participants or survey respondents.

Several participants reported the risk of tokenism, where PRP are involved primarily for extrinsic reasons, e.g., to meet funding requirements or because it is politically correct. In particular, PRP confirmed that patients are still often invited as partners but then not supported and facilitated as contributors. Unfortunately, they are sometimes involved incidentally, which is not in accordance with the concept and definition of a PRP. For this reason it is important to strive for continuous and structural involvement of PRP. When researchers are not intrinsically motivated to incorporate true PRP participation, patients do not feel valued as equal partners nor can they truly contribute. This scenario might also occur even when researchers are properly motivated to involve PRP but are too busy to fully accommodate PRP needs, e.g., when researchers have competing priorities such as reaching a deadline for publication or a grant application. The issue of researchers’ lack of time was raised in several breakout groups; it is clear that involving PRP in research requires an investment of time, energy, and resources.

Finally, several structural barriers were identified: ethical regulations that hinder PRP participation; medical training that has been eminence-based versus evidence-based; and a lack of best practices for PRP involvement. Participants discussed ways to overcome these barriers: researchers should increase awareness of the need for PRP involvement in research, disseminate research findings influenced by PRP involvement, invest effort to involve PRP, make PRP feel valued as equal members of the research team, and make personnel available to coordinate PRP efforts and activities (Table 3).