Knowledge, Experiences and Needs for Engaging Patients and the Public in Health Research
Perspectives from a Survey of Manitoba Health Researchers
By Leah Crockett
This week, we share highlights from a *new* article published in Research Involvement and Engagement. Members of the George & Fay Yee Centre for Healthcare Innovation (CHI)’s Knowledge Translation platform surveyed Manitoba health researchers about their perspectives, experiences, and needs for patient engagement and report on their findings.
View the full publication: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0162-2
Engaging patients and the public meaningfully in research — including decision-making about the entire research process, from setting priorities to knowledge translation of findings — has been embraced in Canada and internationally by universities, funding agencies, and academic publishers. However, researchers (who often hold most, if not all, of the research decision-making power) need to be the ones to lead engagement in their individual research programs.
Patient and public engagement requires knowledge, attitudes, and skills, and represents a novel way of doing research for many. When we began this study, there wasn’t much research done on the perspective of researchers about patient engagement. A 2015 qualitative study found researchers had mixed views on their needs for engagement training. With this in mind, we wanted to study how health researchers in Manitoba perceive patient engagement; their experiences in engaging patients and the public in their work; and what they need to conduct meaningful engagement. These findings have been continually informing development of engagement support, resources, and education through CHI (the Manitoba SPOR SUPPORT Unit) — most of which can be found on our website.
What We Asked
In order to understand factors related to patient engagement (such as barriers and facilitators, attitudes, and experience) that impact behaviour, we incorporated aspects of both the Theoretical Domains Framework and the Determinants of Implementation Questionnaire into the 50-item online questionnaire, which can be found as a supplementary file at https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0162-2#Sec26.
Who We Surveyed
We surveyed Manitoba health researchers, defined as someone who spends at least 10% of their time conducting independent health research as a faculty member at a Manitoba University, or who is eligible to apply for competitive research funding as primary applicant (we had to be specific). Initially, we recruited via university mailing lists, but found that most respondents were those who already had some experience with patient engagement. We wanted to also hear from health researchers without experience, so we conducted a second phase of recruitment with targeted messaging to specific department and communication contacts, via social media, and through posters and handouts.
We included responses from 53 health researchers. Most respondents told us they had experience with patient and public engagement in their work. Nineteen percent said they had no experience whatsoever — almost all of whom also said they didn’t have a good understanding of patient engagement. Of those who said they had experience, about a quarter said they had ‘a little experience’, 44 percent said they had ‘some experience’, and over a third said they had ‘extensive experience’.
Most of the respondents (62 percent) were in the early stages of their research career (less than 5 years as an independent researcher), worked in a university setting, and used mainly quantitative or mixed methods approaches, with a smaller number reporting the use of qualitative approaches (only 15 percent). In terms of the CIHR pillar of health research, nearly half of respondents reported working in either the ‘health systems and services’ or ‘population and public health research’ pillars. Less than 20 percent of respondents identified as working in either the ‘biomedical’ or ‘clinical’ pillars.
To be able to compare data, we grouped respondents into two groups: (1) those with little or no experience with patient engagement and (2) those with some or extensive experience. Not surprisingly, the general trend was that those with less experience tended to be early-career researchers conducting quantitative research, whereas those with more experience tended to be mid-career or established researchers conducting qualitative or mixed-methods research.
Experiences of Patient Engagement
We asked researchers about their previous experience with patient engagement in their work. Overall, patients were the most frequently involved group, followed by families/caregivers; community, patient, or health issue organizations; and communities.
Researchers reported engaging patients and the public throughout the research process, with the least common phases being in grant proposal writing and data analysis.
We also asked respondents about the level of engagement — using the International Association for Public Participation (IAP2)’s Spectrum of Public Participation.
The vast majority of respondents reported engaging at the very lowest levels of the IAP2 spectrum — the ‘inform’ and ‘consult’ levels. About half reported engaging at the ‘involve’ level, and even fewer at the ‘collaborate’ and ‘patient-directed’ levels.
Valuing Engagement
Respondents overwhelmingly agreed about the value of engagement — more than 80 percent agreed with statements that described patient engagement as useful to their own research as well as important to patient-oriented research, health research in general, and to the healthcare system. Respondents also agreed that patients have a right to be engaged in health research. Most also agreed that patient engagement was compatible with their own research program. More than half of respondents disagreed with statements that they felt pressured to engage or were concerned with patient engagement interjecting bias into their research.
There was less agreement among respondents about the current state of meaningful engagement in health research — less than half of respondents agreed that patients and the public are actively and meaningfully engaging in research. Only 16 percent of respondents felt that funders provide enough financial support to researchers for engagement. Just over half of respondents felt their institutions valued engagement.
Barriers to Engagement
When respondents who said they had no experience with engagement were asked what kept them from engaging, responses included a lack of organizational mandate for engagement; experience; training; funding; and time. Some were also unsure whether it was an appropriate activity, and others didn’t think it was relevant to their research area.
We asked all respondents about the key barriers to patient and public engagement in an open-ended question. Responses were coded into categories such as:
- Funding to engage patients and the public;
- Time and compensation for patient and public partners;
- Logistics (such as geographical limitations and recruitment); and
- Motivation and skills required to engage.
For example, one respondent noted: “Long term relationships are difficult as people move from small grassroots organizations readily. My advisory group is an ever-changing, ever-growing group. A few people clearly provide ongoing, regular constant involvement and they have become part of a smaller steering committee.”
When Not to Engage?
When asked if there are areas where it might not be appropriate to engage, responses fell in the general categories of basic & biomedical research (where some believed patient and public partners would not have the skills or knowledge to contribute meaningfully); the relevance of engagement based on the level of involvement and research stage; and the need to take extra care when engaging with vulnerable populations.
Basic and Biomedical Research
“I’m not sure how basic/bench sciences are incorporating these concepts, but I think there is merit to engage patients in those areas also, as it will help with the overall populations education and knowledge about health treatments (especially for example in immunization knowledge)”
Level of Involvement & Research Stage
“I’m not sure that it is inappropriate ever to engage patients if there is sufficient time taken for adequate education about the research methods and process — the expert role is to know and outline the pros and cons of research decisions throughout the process so the engaged team can decide; knowledge is power and will help our society as a whole.”
“I don’t think having patients set the agenda is always appropriate. The skills needed for good research is with researchers, and spending money on whimsical subjects with no clear outcome is wasteful.”
Vulnerable Populations
“If appropriately developed, there is no area that could not be appropriately considered as a research focus. Children and the elderly comprise a considerable impediment due to informed consent issues.”
Engagement Needs
Finally, we asked researchers what supports and training they need for patient engagement. We found that researchers were highly motivated to engage and wanted support and training in every area that we could think of, including advice on planning for patient engagement, and help to facilitate the process over time. They also wanted funding to develop community partnerships and more generous timelines for this work.
Since we did the survey, we’ve been working on addressing these needs. For example, CHI offers:
- Free one-hour consults to help researchers brainstorm and develop a plan for patient engagement;
- Ongoing supports for implementing patient engagement strategies, including facilitation;
- Sharing of research partnership opportunities with patient and public partners who have expressed interest in being involved, including the Patient and Public Engagement Collaborative Partnership;
- A monthly in-person and webinar Patient Engagement Lunchtime Learning series;
- The PREPPP (Preparing for Research by Engaging Patient and Public Partners) Award for Manitoba researchers engaging patients and the public in research design and grant development; and
- Free online patient engagement resources, including online and downloadable budgeting tools and PE Methods Tool.
Input from Patient and Public Partners
We also engaged with CHI’s Patient and Public Engagement Collaborative Partnership (a group of patients, caregivers, and members of the public who act in partnership with CHI to develop its patient engagement goals and strategic directions, and advise at various levels including the Executive Committee and various research projects). The Collaborative Partnership helped us to interpret the findings, and set out future research and practical aspects for patient and public engagement.
We asked the Collaborative Partnership to review a summary of the findings and met with them to discuss their perspectives, including what their initial thoughts on the findings were, what was surprising, what they liked and didn’t like, and what they thought should happen moving forward. They told us we should broaden the definition of a health researcher to include more grassroots and community-based research. They also suggested re-distributing the survey to the same audience to see if perspectives have shifted in the past few years since the survey was done.
The Collaborative Partnership tapped into their own experiences with engagement, noting the importance of follow-up with patients and the public after engagement so they know how they actually contributed to the final research product. They discussed low levels of engagement (i.e. ‘inform’) in the context of their own experiences. For example, they described situations where researchers didn’t give them enough information to be effectively and fully involved in decision-making, perhaps due to pre-conceived notions that patient and public partners may not have the experience or interest to view entire grant applications. They also interpreted some of the findings as researchers do not always see the value of engagement, despite the Collaborative Partnership’s own experiences with successful engagement.
Overall, we found that most researchers reported experience and positive attitudes towards engagement, though most were (at least at the time) engaging at the lowest levels of the IAP2 spectrum. This study highlights opportunities to provide resources and support to researchers looking to involve patients and the public in research in meaningful and authentic ways.
Read the full article at: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0162-2
Share your thoughts with us on Twitter: www.twitter.com/knowledgenudge
About the Author
Leah Crockett is a doctoral student in the Department of Community Health Sciences at the University of Manitoba. Find her on Twitter: @leahkcrockett.
