Patient Engagement in Research and Innovation: A New Framework

Abstract

Patient engagement is a hot topic across Ontario's health system. This imperative is based on evidence that patient engagement contributes to improved patient experience and outcomes [1Baker R.G. Evidence boost: a review of research highlighting how patient engagement contributes to improved care. Canadian Foundation for Health Improvement, Ottawa, ON2014Google Scholar, 2Hibbard J.H. Greene J. What the evidence shows about patient activation: Better health outcomes and care experiences; fewer data on costs.Health Affairs. 2013; 32: 207-214Crossref PubMed Scopus (1102) Google Scholar] and is evident through recent local and system-level changes, including the release of the Patients First: Action Plan for Health Care Report [[3]Patients First: Action Plan for Health Care. Queen's Printer for Ontario, Ottawa, ON2015Google Scholar]. Patient engagement in research is a growing area of interest with evidence showing that it ensures appropriate topics and outcomes are chosen for study, increases study enrollment rates, and aids researchers to secure funding [[4]Demecq J.P. Purtsky G. Elraiyah T. et al.Patient engagement in research: a systematic review.BMC Health Serv Res. 2014; 14: 89-97Crossref Scopus (847) Google Scholar]. Interestingly, the literature shows that patient engagement in research was most feasible and most commonly done at the beginning of the research process, during the agenda setting and protocol development stage [[4]Demecq J.P. Purtsky G. Elraiyah T. et al.Patient engagement in research: a systematic review.BMC Health Serv Res. 2014; 14: 89-97Crossref Scopus (847) Google Scholar]. Locally, a multilevel Patient Engagement in Research framework has been developed to guide and capture the range and scope of patient engagement in practice-based research and innovation (PBRI) at Sunnybrook Health Sciences Centre, a leading multisite academic hospital in Toronto. Sunnybrook defines PBRI as “the systematic approach to creating new understandings of practice with the purpose of integrating this knowledge into innovative approaches to care” and focuses on engaging health professionals at the point of care in research and innovation to advance practice and improve patient care. This paper presents an overview of current local and global patient engagement in research frameworks and describes in detail how our Sunnybrook framework has guided patient engagement in PBRI at the researcher, organization, and system levels. There are a multitude of patient engagement frameworks being used at the local, national, and international levels. Through the Canadian Institutes for Health Research (CIHR) Supporting Patient-Oriented Research Visual Value Model for Patient Engagement and Patient Engagement Framework [[5]Canadian Institutes for Health ResearchStrategy for patient-oriented research (SPOR).2015Google Scholar], we have the national guidance needed to ensure that research and innovation is focused on the priorities that are important to patients, engages patients in the research process in a meaningful way, and produces information that is truly taken up and used to improve health care practice, therapies, and policies. CIHR's Visual Value Model identifies two avenues for patient engagement in research. One includes conducting patient-oriented research, which refers to a range of research that engages patients as partners in identifying health research priorities and conducting research in areas that patients value [[5]Canadian Institutes for Health ResearchStrategy for patient-oriented research (SPOR).2015Google Scholar]. The other avenue highlights the design and undertaking of research projects in partnership with patients [[5]Canadian Institutes for Health ResearchStrategy for patient-oriented research (SPOR).2015Google Scholar]. Actively collaborating with patients, researchers, health care providers, and decision makers has the potential to build a sustainable, accessible, and equitable health care system. There are also a variety of other public and patient engagement in research frameworks and resources that are being used internationally. Most notably, INVOLVE, which is funded by the National Institute for Health Research to support active public involvement in the National Health Service, public health, and social care research in the United Kingdom, and has been in place since 1996. Their goal includes “bringing together expertise, insight, and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritized, designed, conducted, and disseminated” [[6]INVOLVE. National Institute for Health Research, 2015http://www.invo.org.uk/about-involve/Google Scholar]. Other frameworks include the James Lind Alliance—a priority setting partnership that allows researchers, clinicians, and patients to coprioritize identified uncertainties and jointly shape the health research agenda [[7]James Lind AllianceAbout priority setting partnerships.2016http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htmGoogle Scholar]. The Patient Centered Outcomes Research Institute in the United States identifies specific examples of how to engage patients across four stages of the research process: planning the study, conducting the study, disseminating study results, and engagement principles [[8]PCORI Engagement RubricPCORI (Patient-Centered Outcomes Research Institute).2015http://www.pcori.org/sites/default/files/PCORI-Engagement-Rubric-with-Table.pdfGoogle Scholar]. From a Canadian perspective, the Patient and Community Engagement Research Program, housed at the University of Calgary, aims to create infrastructure and partnerships to transform the roles that patients and families play in health [[9]PACER – Patient and Community Engagement Research. University of Calgary, 2016https://obrieniph.ucalgary.ca/pacerGoogle Scholar]. The group provides a variety of services, including training patients/families and/or researchers to work together within health care systems as well as actively studying the impact of patient engagement in research on individuals, groups, and health care systems [[9]PACER – Patient and Community Engagement Research. University of Calgary, 2016https://obrieniph.ucalgary.ca/pacerGoogle Scholar]. A systematic review of 202 studies identified a synthesized patient engagement framework identifying three stages of engagement [[10]Shippee N.D. Domecq Garces J.P. Prutsky Lopez G.J. et al.Patient and service user engagement in research: a synthesized review and synthesized framework.Health Expect. 2013; 18: 1151-1166Crossref PubMed Scopus (355) Google Scholar]. This included the preparatory, execution, and translational stages where agenda setting and identification of research priorities occur in the preparatory phase; study design, recruitment, and analysis occur in the execution phase; and dissemination of results and evaluation of processes occur in the translational stage [[10]Shippee N.D. Domecq Garces J.P. Prutsky Lopez G.J. et al.Patient and service user engagement in research: a synthesized review and synthesized framework.Health Expect. 2013; 18: 1151-1166Crossref PubMed Scopus (355) Google Scholar]. Despite the reported benefits of patient engagement in research, the change of the patient role from a passive to an active one in research also includes considerations. One such consideration is the notion of “lay expertise.” The benefit of engaging patients in research is that they bring a different perspective to the table. However, after multiple engagement events, these patients would most likely gain knowledge and skills regarding the context and research process and therefore may no longer provide the perspective of the “lay person.” In addition, patients are unique, and the idea of several patients being representative of the larger patient population may also prove to be problematic [11Ives J. Damery S. Redwood S. PPI, paradoxes and plate: who's sailing the ship?.J Med Ethics. 2013; 39: 181-185Crossref Scopus (121) Google Scholar, 12Rowland P. McMillan S. McGillicuddy P. Richards J. What is the “patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories.Health. 2016; ([Epub ahead of print])Google Scholar]. With the recent system-wide emphasis on patient engagement, researchers must be careful that engagement of lay (nonclinical/nonhealth services researcher) users is not merely “tokenistic” [4Demecq J.P. Purtsky G. Elraiyah T. et al.Patient engagement in research: a systematic review.BMC Health Serv Res. 2014; 14: 89-97Crossref Scopus (847) Google Scholar, 11Ives J. Damery S. Redwood S. PPI, paradoxes and plate: who's sailing the ship?.J Med Ethics. 2013; 39: 181-185Crossref Scopus (121) Google Scholar]. In addition, researchers must bear in mind that certain groups of patients may be more likely to get involved, leaving out the voices of those who may not always be able to participate as patient partners in research [4Demecq J.P. Purtsky G. Elraiyah T. et al.Patient engagement in research: a systematic review.BMC Health Serv Res. 2014; 14: 89-97Crossref Scopus (847) Google Scholar, 11Ives J. Damery S. Redwood S. PPI, paradoxes and plate: who's sailing the ship?.J Med Ethics. 2013; 39: 181-185Crossref Scopus (121) Google Scholar]. Locally, our Sunnybrook multilevel patient engagement in PBRI framework (Figure 1) was developed based on CIHR's Supporting Patient-Oriented Research Visual Value Model for Patient Engagement [[5]Canadian Institutes for Health ResearchStrategy for patient-oriented research (SPOR).2015Google Scholar] and in alignment with our PBRI Strategic plan [[13]Practice-Based Research and Innovation Strategic Plan 2012-2017. Sunnybrook Health Sciences Centre, Toronto, ON2015Google Scholar]. The framework identifies three levels for patient engagement: researcher, organization, and system levels. At the level of the researcher, patient engagement activity is aligned with CIHR's model on identifying health research priorities and participating in the design and undertaking of research projects. In identifying research priorities, all applicants to our Innovation Fellowship program, which provides paid protected time for point-of-care providers to lead quality improvement projects, are required to address how they have incorporated the patient perspective in their proposal. For example, one of our Innovation Fellows developed and implemented a noise reduction strategy in the operating room based on feedback from patients that the noise level in the operating room made them feel anxious. As it relates to the actual design and undertaking of research projects, many of Sunnybrook's research capacity-building program participants engage with patients during the needs assessment portion of their quality improvement project or to get feedback on a particular process, tool, or form. For example, a Radiation Therapist will be implementing an individualized treatment care plan summary for patients with brain metastases and will be testing its design with patients to ensure that the summary is meaningful to them. In other cases, patients have been engaged as full members of the research team, helping to develop research protocols and ethics applications and actively conducting study activities, including recruitment and data collection. Patients are engaged at the organizational level in a variety of ways. Sunnybrook has partnered with a Patient Champion to assist in forming and launching a fundraising initiative for PBRI. This Patient Champion is a current patient, was a participant in a Sunnybrook practice-based research study led by a Psychologist and an Advanced Practice Nurse, is a senior executive in leadership education, and is a passionate fundraiser. The Patient Champion identified fundraising as one of her top strengths and an area in which she would like to “give back” to Sunnybrook. Research and innovation capacity-building program implementation and education remain a key opportunity for patient engagement across the organization. For example, in our Innovation Fellowship program, patient partners deliver some of the curriculum by sharing their experiences and what was most important to them during their stay. This session is consistently illuminating and humbling for all those who participate. Knowledge translation and disseminating research results are other areas where patients are engaged. Sunnybrook holds a yearly Practice-Based Research and Innovation Expo to provide a venue for clinician researchers to share and disseminate their work. This venue has provided the opportunity for patient engagement through patient-practitioner copresentations. Finally, at the system level, patient engagement has been possible through a PBRI partnership with another Toronto academic health centre, University Health Network. The two hospitals run a joint research and innovation capacity-building program that engages patient partners from University Health Network to review applications to the program and provide specific feedback and suggested ranking. In addition, Sunnybrook engaged the Executive Director of the Council of Academic Hospitals of Ontario as a keynote speaker at their most recent Practice-Based Research and Innovation Expo to share the broader, system-level approach to patient engagement in research. Despite success in engaging patients and families across all three levels of the framework, there is more that can and should be done. An opportunity to further extend how we work collaboratively with patients is during strategic planning. A new PBRI Strategic plan will need to be developed for 2018 onward, and engaging patients and families in designing the plan is critical. In addition, with an increased focus on raising funds for research capacity-building programming, patients will need to play a bigger role in the content and design of our web pages—ensuring that the language and stories highlighted are easily understood and impactful. Continuing to bend and extend the notion of what patient engagement looks like at the research, organizational or system level is critical and should be the focus of every academic health organization. Arlinda Ruco is the Project Manager for Practice-Based Research and Innovation at Sunnybrook Health Sciences Centre in Toronto, Canada, responsible for designing, implementing, and evaluating programs to build research and innovation capacity in point-of-care health professionals. She holds a Master's of Public Health degree from Queen's University and is involved in colorectal cancer screening research. Arlinda is also an Associate Member of the Nursing Best Practice Research Centre (NBPRC) and a Member of the Canadian Centre for Applied Research in Cancer Control. Dr. Kathryn Nichol currently holds the position of Vice President, Best Practices, Research and Education and Chief Nursing Executive at VHA Home HealthCare. In her previous role as Senior Director for Practice-Based Research and Innovation at Sunnybrook Health Sciences Centre and University Health Network, her portfolio was responsible for building capacity in point-of-care health professionals to engage in research and innovation. Dr. Nichol is also an Assistant Professor at the Dalla Lana School of Public Health and the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto and an Investigator at the Centre for Research Expertise in Occupational Disease with an active research program in dermatitis screening.