Finding the Patient Voice in Research Activities: Perspectives of Patient Advisors and Researchers
Introduction: Recent years have seen a significant increase in efforts to incorporate the patient voice into health-related research, with the goals of addressing research questions that are important to patients and including outcomes of interest to patients. Community-Based Participatory Research has a history of including stakeholder partners; however, the current context of patients as partners in health care research reflects an expansion of this approach to include patients in every aspect of the research process. In light of their increasing role, this study examines patient and researcher perspectives on including patients as research partners.
Methods: An online survey was administered to patient advisors engaged with the Patient/Family Experience Program in a large academic medical center (AMC) and to researchers in health-related fields. We report descriptive statistics from survey responses as well as results from our qualitative analysis of themes from open-ended responses.
Results: A total of 72 patient advisors and 81 researchers responded to the survey. Patient Advisors served in three main capacities: service on health system advisory councils (nearly half of respondents), intermittent involvement through focus groups, or through online requests for feedback. Researchers represented a variety of disciplines within biological and social science fields including cancer, health services research, and quality improvement. Patient advisors in this study expressed a strong desire to be involved in research. Researchers expressed mixed views on patient involvement, with some believing patients would lack an understanding of the research process and others expressing appreciation for the unique perspective patients could bring to the research. Patients and researchers suggested similar possible roles for patient partners in research studies, with both groups noting that dissemination and translation activities were areas in which patient partners could be particularly effective.
Discussion: Our results highlight the challenges faced by patients and researchers in truly including a patient voice in research. Patients are eager to provide input but emphasize that they want genuine interest, not tokenism. In an environment where funding proposals frequently require patient and stakeholder input, researchers are searching for guidance in how to best partner with patients.
Keywords: Patient experience, participatory research, patient perspective.
Citation: Sieck CJ, Hefner JL, McAlearney AS. Finding the patient voice in research activities: perspectives of patient advisors and researchers. J Participat Med. 2017 Apr 1; 9:e6.
Published: April 1, 2017.
Competing Interests: The authors have declared that no competing interests exist.
Recent years have seen a significant increase in efforts to incorporate the patient voice into health-related research, with the goals of addressing research questions that are important to patients and including outcomes of interest to patients. Funding agencies are driving this focus on including patients as partners in research. In 2004, the National Institutes of Health established the Council on Public Representatives to produce a framework for community engagement in research.  More specific to the community of patients, the Patient-Centered Outcomes Research Institute, PCORI, was established in 2010 through the Patient Protection and Affordable Care Act to facilitate a patient-centric research infrastructure to address questions that are most relevant to patients and the providers who care for them. Since its first pilot project awards in 2012, PCORI has funded over 500 research projects totaling over $1 billion, as well as an additional $15 million in efforts to engage patients and other stakeholders in the research process. 
The concept of engaging stakeholders in research activities has its origin in Community-Based Participatory Research (CBPR), defined as “a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.”  While CBPR has a long history as an approach to research, it typically requires a substantial commitment to establishing relationships within the community of focus; as a result, this type of research is most commonly conducted in community-based settings. Extending this approach to other research environments can be challenging, particularly because researcher-training programs may not contain an engagement focus.
The Patient-Centered Outcomes Research Institute describes a continuum of engagement that addresses the functional elements of conducting patient-centered outcomes research (PCOR), actions required and outcomes.  Patient engagement is present across all of these concepts. In functional elements, for example, the model describes ways in which patients and researchers can partner, as well as an infrastructure to facilitate these partnerships. Actions include identifying and facilitating partnerships, training for partnerships, and a dissemination process that meets the needs of researchers and patients. Outcomes addressed in this model include those that are relevant to, and in fact often identified by, patient partners.  The institute also establishes a voice for patients and other stakeholders as reviewers in grant process. 
While PCORI’s framework draws upon the rich history of CBPR, the requirement for direct patient engagement in research proposals expands the reach of CBPR concepts. Best practices for patient engagement, including when and how to engage, have yet to be developed.  As researchers outside of the CBPR realm struggle to understand how to actively and authentically engage patients in the research process, little is known about how patients and researchers view this process. To address this question, we examined the perspectives of researchers and patients on engaging patients as partners in the research process. The goal of this study is to identify what both groups value about these approaches and how best to facilitate such partnerships.
We administered two open-ended online surveys at a large mid-Western university and Academic Medical Center (AMC) with an active patient advisor program. The first survey was sent to volunteers serving as patient advisors with the Patient and Family Experience Advisor Program (PFEAP) associated with the AMC. Advisors are recruited through a variety of means and can serve on regularly convened advisory councils as well as provide intermittent feedback on health system processes and research questions. The PFEAP supervises over 150 patient advisors on seven health system councils, including a system-wide council that serves as a means for researchers to request patient feedback as needed. In addition, the PFEAP maintains an online-only group of volunteers who provide feedback on a range of issues when requested. The second survey was sent to researchers via emails to faculty listservs in departments considered most likely to engage patients including the Colleges of Medicine, Public Health, and Nursing, and to researchers who have accessed patient advisors through the PFEAP system-wide council.
Both surveys addressed patient and researcher experience with patient/researcher partnerships, thoughts on how to facilitate partnerships, what roles patient partners can play, and training availability and need. In addition, questions included in the patient advisor survey asked respondents to describe their participation as patient advisors and the process of communication between patient advisors and the councils on which they served. Questions in the researcher survey asked about how whether respondents had ever worked with patients as partners in their research, and what actions the researchers took to ensure patients felt comfortable providing input to the research.
A total of 72 patient advisors (response rate 48%) and 81 researchers (response rate not calculated because the total number of researchers approached via the listservs is not known) responded to the survey. Patient advisors served in three main capacities: 1) service on health system advisory councils, 2) intermittent involvement through focus groups or 3) through online requests for feedback. Nearly half of patient advisor respondents reported ongoing involvement through various councils. Researchers represented a variety of disciplines within biological and social science fields including cancer, health services research, and quality improvement. Only 14% of researcher respondents had worked with patients as partners in their research.
Common Themes about Involving Patients as Research Partners
We identified three main themes common in patient and researcher responses: 1) thoughts on whether patients can be involved as partners, 2) what aspects best facilitate a successful partnership, and 3) training needed. In Table 1 we present these themes and associated sub-themes, and provide summaries of the concepts addressed under each theme. Below Table 1, we provide a more detailed description of our findings.
Perspectives of Patient Advisors
Based on survey results and analysis of open-ended comments, we found that patient advisors were generally positive about their advisor activities, including those focused on research, and described an open and accepting environment. Most felt that advisors tended to respond to questions rather than to initiate; however, many described an environment in which advisors felt free to do both equally according to the needs of the situation. They felt that communication is enhanced when researchers actively solicit thoughts and opinions from the advisors and wanted to remain in contact so that they know what happened as a result of their advice. Advisors also noted the importance of providing multiple ways for advisors to give input, such as through in-person meetings, electronic communication, and surveys.
Those patients who had participated as research partners felt that their perspectives as patients provided unique and important views that should be included in research design. As one advisor commented, “It is critical that patients with experience in the topic being investigated help with research. They often bring a unique insight to study design, helping to focus on quality of life issues.” Another stated, “I think including the advisors would be a plus. Advisors can’t understand researchers but researchers sometimes see the study and not the Patient. Researchers and Doctors need to be reminded that Patients are people first.”
Finally, patient advisors recognized the importance of training patient partners about the research process and research designs. They felt this training should avoid the use of jargon and provide overall research training as well as specific orientation to the particular area of study. One advisor suggested the following topics: “…a basic overview of research, how research is conducted, its value to the overall health care industry, how long it takes to do and when results should be expected. Many of us are not scientists, so the training should be understandable and without jargon.”
Perspectives of Researchers
Most researchers who responded to this survey reported having had no direct experience including patients as research partners. Many also noted that patients might not understand the research process and/or the specifics of their particular research project. They also commented that involving patients in this capacity requires an additional time commitment that many perceived as a barrier to this type of work. For example, “These steps would make the process more cumbersome, but could result in a process much more patient friendly with a higher participation rate.” Despite this barrier, some researchers recognized that patients provide a unique and useful perspective and may increase participation and support from the patient community. One stated, “I believe that this has helped me focus on research questions that are important to my population (caregivers and their children with asthma) and develop interventions that are more likely to be adhered to.”
Among researchers who had collaborated with patients in their research, we noted descriptions involving patients in several ways including the limited approach of having patients serve in an advisory role only or incorporating patients more comprehensively such as having patients provide input on the proposal development process, assistance with recruitment, and help interpret results. One respondent reported working with a patient advisor to co-author a manuscript. In the experience of these respondents, keys to a good working relationship included clearly defined roles, avoiding technical jargon, and treating patient partners as equals throughout the process. They viewed these interactions as ongoing relationships rather than a single point of contact. For example, a health disparities researcher stated, “I think the biggest factor is showing them respect. I view myself as their guest while they are inviting me into their homes and lives. They are equal partners on the research team and when they feel like equal partners they become fully engaged and very passionate about the success of the project.”
Patient Partner Roles
Patient advisors and researchers expressed similar thoughts about roles that patient partners can take and perceptions of the importance of such a partnership, with researchers providing greater specificity (Table 2). Both groups recognized that patient input could be solicited either on an as-needed basis or through regular, on-going contact, with the frequency dictated by the needs of the study. In addition, both groups felt that patient input on protocol design would help to ensure that it is practical for patients to follow.
Patients also felt they should be included early in the process and discussed the importance of genuine inclusion, not recruiting a token patient representative who might be considered adjunct to the team. One patient advisor stated, “It works great if the researchers respect the patient advisor and their views. I have worked with groups that really used my insight and experiences, and I have worked with groups that included me in name only. The advisor has to understand their role and feel comfortable giving insight. The researchers need to accept the patient advisor and actively include them in the process.”
Several researchers felt that patients were particularly suited to helping other patients understand why to participate in research as well as the results of research. One researcher explained, “They also have the ability to help recruit subjects by translating the science into terms that the participants can understand. Patient advisors often are involved in communities that would benefit from the research, so they can help promote the results to the population at large.”
Patient advisors in this study expressed a strong desire to be involved in research. Many expressed their commitment to improving health care delivery through their experience on patient advisory councils and wished to expand this role to research activities, particularly those related to translation of research findings into practice.
Researchers expressed a variety of opinions about including patients as research partners. Interestingly, few respondents had incorporated patients in this capacity, and many respondents expressed the opinion that there were significant challenges that made such collaborations impractical in their research. Some also felt that patients would lack an understanding of the research process, thus making patient input too limited to be of value. Others recognized the increased time commitment patient partnerships would entail, but felt that the unique perspective patients could bring to the research was nonetheless important.
Patients and researchers suggested similar possible roles for patient partners in research studies. Both groups felt that dissemination and translation activities were areas in which patient partners could be particularly effective. This finding is in contrast to how patient engagement in research is currently conducted. Two recent systematic reviews on this topic found that patients were most actively engaged at the beginning of the research process and less frequently during the dissemination and translation phases This incongruence between current practice and what patients and researchers feel is most beneficial supports calls in the literature to study the barriers to engagement at various research phases, and the potential benefits of patient inclusion at each stage. 
Several patients and researchers stressed the importance of genuine inclusion and avoiding ‘tokenism’ in which partners receive only superficial opportunities for input. Our results show that though patients may be included at various phases of the research process, they may feel only superficially engaged. This has implications for researchers engaging patients, as well as for research on the engagement process. In order to establish a good partnership, researchers should include patients as early as possible in the process, fostering an open and respectful environment. Additionally, research on the engagement process should not consider patient engagement a binary variable, but determine the level and strength of engagement.
Finally, both groups noted that training for patient partners is necessary. Patients felt that their experiences were useful in shaping research questions but they needed to understand the research process to best apply their experiences. They felt that training would need to focus on the language of research presented in lay terms. Such training can help patients in dissemination and translation roles. Researchers also acknowledged that patients may need orientation to research and some felt it was simply too difficult for patients to grasp. Our findings highlight the need for training resources to assist researchers and patient partners in developing partnerships. While PCORI offers guidance on roles for patient and stakeholder partners at various stages of research and online glossaries exist for describing research terms, researcher/patient advisor teams must assemble their materials individually.  To advance patient/researcher partnerships in health care research, more work is needed to develop applicable training materials that will facilitate these relationships.
We note several limitations to the generalizability of this study. While the response rate for researchers was not calculable, the number of responses was relatively low and therefore is unlikely to be representative of the entire health-related research community. In addition, our survey was administered at only one institution. While the research conducted by our respondents represented a variety of fields in which partnership with patients was appropriate, some respondents worked in fields where partnership opportunities might have been less obvious. Finally, our patient respondents were drawn from a group of existing patient advisors. While many had never participated as research partners, they had volunteered to provide input in a variety of ways and therefore may have had a different perspective than patients with less experience as advisors.
Our findings reflect the current struggle in conducting patient-centered research. Over the years, patients have been encouraged to view themselves as partners in their care and are now expanding that approach to shaping research agendas. Researchers in health-related fields are seeking ways to respond to the mandate to include the patient voice in their research, both due to the emphasis in funding opportunities as well as a philosophical appreciation for the importance of the patient experience. The challenge is in finding how to include patients as partners in an authentic manner.
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Copyright: © 2017 Cynthia J. Sieck, Jennifer L. Hefner, and Ann Scheck McAlearney. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.