What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

Abstract Background US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient‐centered evidence better aligned with real‐world clinical needs. The Patient‐Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health‐care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health‐care decision making. Objective To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI‐funded research projects and how such engagement changed their lives. Methods We conducted thematic analysis of open‐ended survey responses from 255 patients, family caregivers and individuals from advocacy and community‐based organizations who engaged as partners on 139 PCORI‐funded research projects focusing on a range of health conditions. Results Partners' motivations for engaging in research were oriented primarily towards benefiting others, including a desire to improve patients' lives and to support effective health‐care interventions. In addition to feeling they made a positive difference, many partners reported direct benefits from engagement, such as new relationships and improved health habits. Discussion and Conclusions By identifying patient and caregiver motivations for engaging in research partnerships and what they get out of the experience, our study may help research teams and organizations attract partners and foster more satisfying and sustainable partnerships. Our findings also add to evidence that engagement benefits the people involved as partners, strengthening the case for more widespread engagement.


| INTRODUC TI ON
Patients, family caregivers and organizations that represent them are important consumers of health research. Meaningful involvement of patients and caregivers in health research has long been identified by participatory research advocates as necessary to ensure that research and evidence are relevant, useful and trusted by individuals and communities. 1,2 Such involvement, also known as engagement in research, occurs when patients and caregivers are active partners in prioritizing, designing, conducting and disseminating research. In the last decade, policies and initiatives promoting patient engagement in health care broadly and in research specifically have gained prominence in the United States as a key strategy to make the health-care system more patient-centered and efficient and to achieve better health outcomes for individuals (eg [3][4][5]. A growing body of literature suggests that patient engagement can improve evidence for decision making by ensuring that research questions and outcomes studied are relevant to patients' needs, that studies successfully enrol and retain participants, and that findings are shared with those who need them (eg [6][7][8][9][10].
While a promising strategy to improve research evidence, engaging patients and other stakeholders in research partnerships requires resources and effort. 8,[11][12][13] Researchers and partners may face challenges related to building relationships and communicating, including ensuring that partners feel heard and valued, managing expectations about project progress or roles, and maintaining consistent partner participation. 11,[13][14][15] Ultimately, fostering mutually beneficial and sustainable engagement on a larger scale will require more effective approaches for attracting research partners, engaging them in the research process and maintaining relationships.
Understanding the experiences of patients and caregivers who engage as research partners, particularly their motivations and perceptions of how engaging affects their lives, can inform strategies for developing and sustaining satisfying research partnerships. Yet, the current engagement literature focuses mostly on the effects of engagement on research processes and outcomes, with less attention paid to the people engaged as research partners. A UK study found that patients and caregivers describe several altruistic and personal motivations for engaging in research, such as making a difference in patient care, giving something back to the National Health Service and gaining a better understanding of health problems. 16 Other research, also conducted mainly in the UK, found that patients and caregivers report personal benefits of engaging as research partners, including feeling valued and empowered and gaining new skills and better knowledge of research. 11,[16][17][18][19] Less commonly, patients report negative effects of engaging, such as feeling undervalued by researchers, feeling burdened by demands of the role and not knowing if their input makes a difference. 11

| MATERIAL S AND ME THODS
This exploratory qualitative study is part of a larger mixed-methods study using survey data to examine experiences of patients and other stakeholders engaged as partners on PCORI research projects. MaGil Institutional Review Board (now Advarra) approved this research.

| Patient and stakeholder involvement
PCORI's Advisory Panel on Patient Engagement, which recommends how to ensure patient-centeredness in PCORI's work, guided this study from inception. The panel is comprised primarily of patients and caregivers, along with researchers, clinicians and other stakeholders. Advisory panellists informed this study's research questions, data collection tool, analytic approach and interpretation of findings.

| Data collection
PCORI collected data between March 2016 and July 2018 from patients and other stakeholders engaged as partners on PCORIfunded research projects. As part of annual reporting requirements, 303 principal investigators were asked to nominate up to 10 stakeholder partners per project to share their experiences by answering

| Analysis
We conducted descriptive statistics to examine characteristics of partners in the sample and the projects they represent. For the primary analysis, we developed a codebook to capture concepts

| RE SULTS
Overall, most of the 255 partners in the sample were female, White and had high levels of educational attainment (almost 70% reported having a college or postgraduate degree) ( Table 1).
Partners represented 139 different projects, with one to nine partners responding per project (mean ± SD = 1.8 ± 1.2 partners per project). Projects in the sample address a range of health conditions and topics, including cancer, mental and behavioural health, and rare diseases, and used a variety of approaches to engage partners, such as advisory panels, focus groups and patient co-investigators. 10

| Motivations for engaging in research
When describing why they engaged in a particular research project, partners cited connections to their personal experiences living with or caring for someone with a particular health condition, working with people who have or are at risk of a condition, being part of a community affected by a condition, or participating in previous research. Five main reasons, or motivations, for engaging emerged (Table 2), ranging from improving people's lives to having a voice in research to learning more about a specific health topic. Patients, caregivers and representatives of advocacy and community-based organizations expressed each of the five themes.

| Improving people's lives or health-care experiences
Partners reported wanting to help improve people's lives and patient outcomes by addressing such issues as survival, quality of life, access to care and prevention of health problems. For example, one patient partner from a project about serious mental illness said, 'I want to contribute to this research project because I want to help improve the quality of life of others in need and I believe research is the best mechanism to do so'. Similarly, partners wanted to improve health-care experiences and patient-provider communication. Some highlighted motivations related to patient education and self-management, such as increasing awareness of a condition or improving information for decision making.

| Addressing a gap for underserved communities
Partners noted that the population or condition of focus in the research project was understudied, underserved, poorly understood or had an unmet need. Examples of underserved populations included Latina, Black male, elderly, rural and native populations, as well as those with less access to specific types of health care. For example, one caregiver partner participating in a project examining telehealth services stated, 'This project will fill a need of families in remote parts of the country, and someday the world, by connecting them with current up-to-date information that will help them support their children'.

| Believing in the value of the health intervention
Partners expressed a belief that the studied health intervention or treatment would help patients and families, and some were moti-

| Representing a perspective and having a voice in research
Partners indicated the importance of people with their backgrounds or experiences participating in 'research that affects their lives'.

| Less commonly reported motivations
Another reported motivation was the desire to work with a specific investigator whose work or project was already known to the partner.
Additionally, one caregiver partner mentioned more practical reasons

| Changes in partners' lives from engagement
Five themes emerged from partners' descriptions of how engaging in the research project changed their lives, ranging from feeling they made a positive difference for patients to improving their personal health to developing skills and professional opportunities (Table 3).
Patients, caregivers and representatives of advocacy and community-based organizations expressed each of the five themes.

| Making a difference
Partners discussed feeling that their contributions helped improve health care or the lives of patients. Some partners focused on making Others indicated that their experience gave them hope for the future. For example, one partner representing an advocacy organization wrote, 'Yes, it has given me hope that 'the unheard' have had their say and will not only be listened to but changes will be implemented in the future of our state's healthcare'. Partners also noted that they and/or the organizations they represent developed new or better relations with researchers. For instance, one partner representing a community-based organization said, 'It has developed positive relationships between our non-profit agency and the University researchers'.

| Improving personal health and health care
Partners described improvements to their own health or health-care

| Developing skills and professional opportunities
Partners described several ways their experience led to self-im- become more patient-centered and I've improved my ability to work as part of a team'.
Partners also discussed obtaining or pursuing a new job or responsibilities, such as a seat on an organizational board, going to medical school or changing to a job more closely related to their role on the research project. As one partner from an advocacy organization wrote, 'This project has helped me to expand my thinking…to redefine who I am, and work towards the goal of making it my career'.

| No changes
Some partners reported that engaging in research had not led to any changes in their lives. While most of these partners did not expand on their answer, some noted they still had a positive experience as a research partner. A few partners stated that the project was in an early stage or that they were not involved enough to experience any influences.

| Limitations and future research
This study has some notable limitations. Partners included in the study were selected by the project's principal investigator to receive a survey invitation, participation was voluntary, and the survey was administered in English only. Investigators may have nominated partners who had more positive experiences. Although our study's sample is more diverse than prior research in this area, 16 the majority of partners in our sample were non-Hispanic, White, female and had high levels of educational attainment. We are unable to determine whether partners in this study are representative of PCORI partners overall. We also could not adequately explore potential differences in responses according to partners' race, ethnicity or education. Future studies should be designed to ensure a more diverse sample of partners, with particular attention to inclusion of groups with a history of underrepresentation in research.
The survey question asking partners how engagement changed their lives included examples that could have steered some partners towards certain responses (see Table 3). However, partners were able to meaningfully elaborate on their experiences, and many part-

| CON CLUS IONS
PCORI's main objective is to fund research that produces more useful, relevant and patient-centered evidence to guide health-care decisions of patients, caregivers, clinicians and other stakeholders. Engaging stakeholders, especially patients, as partners in all aspects of the research process is a key strategy to achieve this objective. Although engagement in research can be time-consuming and challenging, growing evidence shows that engagement benefits not only the research itself but also people involved as partners, adding to the case for making engagement more widespread.
As the evidence base for research engagement continues to grow, more organizations, including funders, academic institutions and health-care systems, likely will consider implementing or refining policies and resources to support engagement, and opportunities for patients to engage in research are likely to grow. By illuminating why patients and caregivers engage as partners in health research and what they get out of the experience, our findings can guide researchers in designing strategies to attract partners and foster mutually beneficial and sustainable research partnerships.

ACK N OWLED G EM ENTS
PCORI thanks the research partners who made this work possible by sharing their experiences. The authors also gratefully acknowl-

CO N FLI C T O F I NTE R E S T
The authors have no conflicts of interest to disclose.

DATA AVA I L A B I L I T Y S TAT E M E N T
Research data are not shared due to confidentiality and parameters of the consent obtained. Please contact the corresponding author for more information.