key: cord-0696803-0zvz7yxu
authors: Leese, Jenny; Garraway, Leana; Li, Linda; Oelke, Nelly; MacLeod, Martha
title: Adapting patient and public involvement in patient‐oriented methods research: Reflections in a Canadian setting during COVID‐19
date: 2021-11-12
journal: Health Expect
DOI: 10.1111/hex.13387
sha: ed425441143f6dd4ae3db474917bc2cff8dba784
doc_id: 696803
cord_uid: 0zvz7yxu

BACKGROUND: Processes of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of ‘nothing about us without us’ in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting. METHODS: As part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change. DISCUSSION: Our reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI. CONCLUSION: These learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future.

In response to recent historic events, such as the coronavirus disease 2019 (COVID- 19) pandemic, approaches to patient and public involvement (PPI) are shifting. PPI involves doing research with, or by, the public rather than to, about, or for the public. 1 The term 'public' refers broadly to patients, potential patients, carers and people who use health and social care services as well as people from organizations that represent people who use these services. 1 At the heart of PPI is a core value of social justice, shaped by wider societal developments towards realizing citizen empowerment. Requirements for PPI in clinical research by funders in the United Kingdom, the United States and Canada indicate a commitment and aspiration to involve patients and the public, thereby delivering high-quality research that is meaningful to those it stands to impact most. 2-4 Support for PPI, specifically in patient-oriented methodological research on KT and implementation science (IS), is growing but in its infancy. 5 For most, PPI in KT-IS methods research is not commonplace.

The full impact of COVID-19 on practices of PPI is not yet known. Academic institutions and community organizations face challenges (e.g., quick transitions, changing priorities, financial shortfalls, increased needs from existing clients) in operating within the rapidly altered landscape, which has the potential to jeopardize advances in PPI. 6, 7 Unfortunately, some early reports indicate disruption and reduction in PPI. [8] [9] [10] This is at a time when advancements in PPI are still critical, if not even more so because disparities in health outcomes among communities least likely to be involved in PPI have been exacerbated by COVID-19. [11] [12] [13] Patient and public partners continue to have a right to be involved in the conduct, management and governance of any publicly funded research if they choose.

In this viewpoint, we contribute to a small but growing literature that aims to support research teams to uphold commitments to nurturing PPI across all communities through times of fast-moving change. 9,10,14-16 Although training and tools developed pre-2020 exist to support practices of PPI, little evidence is currently available on how to adapt and sustain these practices in ways that sensitively attend to the current context. 1, 17 At this opportune time in the midst of the ongoing COVID-19 pandemic and its impact on long-standing health inequities, we aim to stimulate readers' further discussion and inquiry into PPI. We share key reflections on how to adapt and sustain PPI in patient-oriented methods research informed by perspectives shared in a Canada-based self-study. Research) Units that aim to support partnerships in patientoriented research between academics and others, including patients and the public. 18 In British Columbia, the SUPPORT Unit has uniquely created six Methods Clusters, which have the mandate to advance methodological research in specific areas by supporting investigatorinitiated projects. The Knowledge Translation-Implementation Science (KT-IS) Methods Cluster has funded five projects to date (https://bcsupportunit.ca/about/methods-clusters/knowledgetranslation-and-implementation-science). Each project team is diverse in its composition and process of PPI. Each team also has a separate focus, including studying consensus methods in integrated KT to promote patient-oriented research, a hermeneutic approach to IS, the creation of an online set of systems-thinking tools for community groups, the development of an online portal for citizen science, and using documentary as a method of KT to reach the 'sandwich generation'. All are led by senior researchers with long histories of PPI and involve at least one patient partner.

In 2019, we began a quality improvement self-study with the project teams to gain a better understanding of what it means for patients and the public to partner in research on methods. We conceptualized self-study as a methodology for studying professional practice that was self-initiated, collaborative and aimed towards improvement through learning from experience. 19 The original purpose of the self-study was to provide the project teams with the opportunity to engage in collaborative reflection on ways of working through common issues encountered in PPI in their methodological research. Informed by the Alberta Innovates Ethics Screening Tool (https://albertainnovates.ca/programs/arecci/), it was determined the self-study was a low-risk quality improvement study that did not need research ethics board review. At the design stage of the selfstudy, we did not anticipate COVID-19 and its impact, nor that the self-study would come to offer insight into how to adapt PPI during times of turbulent social change. Figure 1 provides a timeline of how the self-study unfolded alongside major events of 2020.

As part of the self-study, 18 members of four project teams (4 researchers; 5 patient/public partners; 4 research staff; 2 research trainees; 3 project leads) took part in one-to-one interviews between January and April 2020. One project team chose not to participate in the interviews due to team priorities before and during the COVID-19 pandemic; however, the team's project lead provided regular updates on their activities and contributed to overall self- pandemic is dynamic and fast-changing, frequent and systematic check-ins with the patient and public partners to re-evaluate needs and research directions may be warranted. 14 

Many project team members had already built relationships with each other before joining their respective projects, with some having research partnerships that had developed over years. The benefits of forming the project teams with established relationships were recognized among team members before COVID-19, particularly because easier social connections and trust that had been built over time helped to mitigate feelings of unease during times of uncertainty Jan-Apr 2020 18 members of 4 methods cluster research teams (4 researchers; 5 paƟent/public partners; 4 research staff; 2 research trainees; 3 team lead researchers) took part in a semi-structured one-toone interview (approx. 45 minutes) with [authors removed to blind submission] as part of a quality improvement self-study. Of these interviews, 4 (3 team lead researchers; 1 researcher) took place aŌer the World Health OrganizaƟon declared a pandemic on March 11. A public health emergency was declared in BriƟsh Columbia on March 17. Physical distancing measures were introduced.

A themaƟc framework analysis approach was taken by [authors removed to blind submission]. Preliminary themes were idenƟfied, and discussed with 25 members from 3 methods cluster teams (10 researchers; 6 paƟent/public partners; 2 research staff; 3 team lead researchers, 4 research trainees) in facilitated discussions. Black Lives MaƩer organized rallies in the US and worldwide following the killing of George Floyd in Minneapolis on May 25. Before COVID-19, sustaining relationships had involved taking opportunities to engage in conversation or 'chit-chat' that was nonproject-related with other team members. The project lead created these opportunities during regular in-person team meetings or by making themselves available outside of these meetings. A research staff member also described meeting a patient/public partner over coffee to connect on a more informal level while discussing their project. During the COVID-19 pandemic, the need to evolve these usual methods for sustaining relationships was immediate, especially with physical distancing measures and no in-person activities.

Leveraging online communication platforms was welcomed, particularly by a patient partner who had used technology regularly before COVID-19 to join team meetings. He emphasized too, however, there were sometimes technical glitches, or had difficulty sharing documents or ideas when brainstorming with other attendees.

Others also reworked quickly with large teams to continue PPI during the COVID-19 pandemic, supported by long-standing relationships. [20] [21] [22] Much support has also been given to exploring new approaches that enable partners to sustain relationships through online communication. 10, 16 Others also experienced some challenges (e.g., feelings of apprehension) in adapting to sustain partnerships using online platforms during the COVID-19 pandemic. 9,10,14 Based on the experiences of patient and public partners they had been working with during the COVID-19 pandemic, Chew-Graham recommends making contact with partners before virtual meetings to offer technical support and help them to feel comfortable using online platforms available. 10 Rheumatology Alliance. 23 We also acknowledge that some patients and public partners may not have access to the internet or technology to be able to connect remotely. Further research is therefore needed to learn more about how to successfully sustain relationships in PPI with and without technology during times of fast-moving change.

Before the outbreak of COVID-19, project team members identified hearing differing perspectives as a vital component of successful PPI.

The importance of hearing others' perspectives in the process of establishing shared goals and reaching mutual benefit was commonly highlighted. A key benefit of hearing differing perspectives shared by patient and public partners was that it kept discussions focused or 'grounded' in the real-world significance of the studies, which was particularly important given the seemingly more abstract nature of research on methods. ples and other at-risk populations (e.g., people who are homeless, incarcerated or living in poverty) as a key priority for PPI. 25 Further research is needed to explore paths forward to hearing differing perspectives in PPI with communities most at-risk, particularly in the midst of turbulence. The importance of using inclusive language in exploring these paths forward has also been emphasized. 15, 26 We highlight too, the importance of avoiding tokenistic efforts by fostering authentic partnerships over time while acknowledging the difficulties of building trust given legacies of oppression.

Our reflections contribute to the growing literature that can support meaningful PPI practices to adapt and persist in turbulent times of fast-moving change. Recent historic events disrupted many aspects of PPI. It is imperative researchers take advantage of the opportunities this disruption has brought to improve PPI practices so that all patient and public partners are meaningfully involved in shaping the future of their health through involvement in research if they choose.

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We specially thank all members of the KT-IS Methods Cluster Project Teams at the BC SUPPORT Unit who shared their time and experiences to develop the learnings presented in this analysis paper. We also thank Sarah Munro and Allan Best for their contributions to the project.

The authors declare that there are no conflict of interests.

All authors contributed to the conceptualization of this manuscript.Jenny Leese led the initial draft with substantial contributions from 

Research data not applicable to this Viewpoint article.

http://orcid.org/0000-0002-0460-4317Linda Li http://orcid.org/0000-0001-6280-0511