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      COVID-19: Public and patient involvement, now more than ever

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          Abstract

          The research community is responding with speed to the COVID-19 pandemic, with rapid response mechanisms to fund research, shortened application turnaround times, and expedited research ethics processes. Public and patient involvement (PPI) is under pressure in this rapid response research, where it is easy for researchers and funders to dismiss PPI as non-essential, an added extra, a “nice to have”. 

          In this open letter, we, researchers and PPI contributors, argue that PPI is important, now more than ever. The pandemic is impacting everyone in society, with normal rules of engagement discarded. The solution to overcoming this virus will come from many different sources and many changes will emerge to healthcare delivery and to how we live our lives. It is essential that the research to find solutions is shaped by all who will be impacted: the public and the patient must be central contributors and their voice must be hear.

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          Waste in covid-19 research.

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            Community participation is crucial in a pandemic

            Community participation is essential in the collective response to coronavirus disease 2019 (COVID-19), from compliance with lockdown, to the steps that need to be taken as countries ease restrictions, to community support through volunteering. Communities clearly want to help: in the UK, about 1 million people volunteered to help the pandemic response 1 and highly localised mutual aid groups have sprung up all over the world with citizens helping one another with simple tasks such as checking on wellbeing during lockdowns. 2 Global health guidelines already emphasise the importance of community participation.3, 4 Incorporating insights and ideas from diverse communities is central for the coproduction of health, whereby health professionals work together with communities to plan, research, deliver, and evaluate the best possible health promotion and health-care services. 5 Pandemic responses, by contrast, have largely involved governments telling communities what to do, seemingly with minimal community input. Yet communities, including vulnerable and marginalised groups, can identify solutions: they know what knowledge and rumours are circulating; they can provide insight into stigma and structural barriers; and they are well placed to work with others from their communities to devise collective responses. Such community participation matters because unpopular measures risk low compliance. With communities on side, we are far more likely—together—to come up with innovative, tailored solutions that meet the full range of needs of our diverse populations. In unstable times when societies are undergoing rapid and far-reaching changes, the broadest possible range of knowledge and insights is needed. It is crucial to understand, for instance, the additional needs of particular groups, and the lived experiences of difficulties caused by government restrictions. We know lockdowns increase domestic violence; 6 that rights and access to contraception, abortion, and safe childbirth care risk being undermined; 6 and that some public discourse creates the unpalatable impression that the value of each individual's life is being ranked. Identifying and mitigating such harms requires all members of society to work together. Past experience should be our guide. Grassroots movements were central in responding to the HIV/AIDS epidemic by improving uptake of HIV testing and counselling, negotiating access to treatment, helping lower drug prices, and reducing stigma.7, 8, 9 Community engagement was also crucial in the response to Ebola virus disease in west Africa—eg, in tracking and addressing rumours. 10 Coproduction under the pressures of the COVID-19 pandemic is challenging and risks being seen as an added extra rather than as fundamental to a successful, sustainable response. Good mechanisms for community participation are hard to establish rapidly. High-quality coproduction of health takes time.11, 12 Meaningful relationships between communities and providers should be nurtured to ensure sustainable and inclusive participation. Managing participatory spaces takes sensitivity and care to recognise and harness the different types of knowledge and experiences brought by diverse communities and individuals,13, 14 and to avoid replicating social structures that could create harms such as stigma. So how can we create constructive coproduction in the context of emergency responses to the COVID-19 pandemic where time is short? We summarise the key steps in the panel . Panel Steps to community participation in the COVID-19 response Invest in coproduction • Fund dedicated staff and spaces to bring the public and policy makers together • Create spaces where people can take part on their own terms (eg, avoid bureaucratic formalities or technical jargon) • Move beyond simply gathering views and instead build dialogue and reflection to genuinely codesign responses • Invest not only for this emergency but also for long-term preparedness Work with community groups • Build on their expertise and networks • Use their capacity to mobilise their wider communities Commit to diversity • Capture a broad range of knowledge and experiences • Avoid one-size-fits-all approaches to involvement • Consciously include the most marginalised Be responsive and transparent • Show people that their concerns and ideas are heard and acted upon • Collaborate to review outcomes on diverse groups and make improvements First, governments should immediately set up and fund specific community engagement taskforces to ensure that community voice is incorporated into the pandemic response. This requires dedicated staff who can help governments engage in dialogue with citizens, work to integrate the response across health and social care, and coordinate links with other sectors such as policing and education. This engagement will require additional resources to complement existing health services and public health policy. Dedicated virtual and physical spaces must be established to co-create the COVID-19 response, with different spaces tailored to the needs of different participants—eg, different formats for discussion, timings, locations, and levels of formality. Second, those of us working to address COVID-19 in the health and social care sectors and beyond should look to existing community groups and networks to build coproduction. Engagement with such groups is needed to include their voices in local, regional, or national responses to the pandemic. How can we ensure that the most marginalised are represented? How can we ensure front-line providers have a chance to feed into service improvements when they are already working long hours with little respite? Third, policy makers working on the COVID-19 response should ensure citizens understand that their voices are being heard. Showing how policy responses or local actions address specific concerns will help communities believe that their wellbeing is valued and their needs addressed, which in turn will help increase compliance with restrictions and encourage sharing of creative solutions. Examples of responses to citizens' concerns have included introducing income guarantees for the self-employed; 15 implementing road closures and widening to allow safer cycling and walking; 16 and policy changes on home use of abortion medication to reduce risk of infection from attending clinics. 17 Institutional cultures that support coproduction must be created in political and health systems. 18 We would argue that mechanisms to ensure citizen participation are essential for high-quality, inclusive disaster response and preparedness, and these can be called upon again in future emergencies. All societies have community groups that can co-create better pandemic response and health services and politicians must be supported to incorporate these voices. Such public participation will reveal policy gaps and the potential negative consequences of any response—and identify ways to address these together. Community participation holds the promise of reducing immediate damage from the COVID-19 pandemic and, crucially, of building future resilience.
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              Values associated with public involvement in health and social care research: a narrative review

              Abstract Background Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI. Objective The narrative review reported here is part of a larger MRC‐funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework. Methods We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks. Results Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values). Conclusion Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.
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                Author and article information

                Contributors
                Role: ConceptualizationRole: MethodologyRole: Project AdministrationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: Writing – Review & Editing
                Role: Writing – Review & Editing
                Role: Writing – Review & Editing
                Role: Writing – Review & Editing
                Role: ConceptualizationRole: Writing – Review & Editing
                Journal
                HRB Open Res
                HRB Open Res
                HRB Open Res
                HRB Open Research
                F1000 Research Limited (London, UK )
                2515-4826
                8 June 2020
                2020
                8 June 2020
                : 3
                : 35
                Affiliations
                [1 ]PPI Ignite @ NUI Galway, NUI Galway, Galway, Ireland
                [2 ]Public Advisory Panel, PPI Ignite @ NUI Galway, (voluntary co-facilitator), Ireland
                [3 ]UCD School of Nursing Midwifery and Health Systems, Belfield, Dublin, Ireland
                [4 ]Public Advisory Panel, PPI Ignite @ NUI Galway, Galway, Ireland
                [1 ]Health Promotion Research, Steno Diabetes Center Copenhagen, Copenhagen, Denmark
                [1 ]School of Primary, Community and Social Care, Keele University, Keele, UK
                [2 ]NIHR Research Design Service, Keele, UK
                Author notes

                No competing interests were disclosed.

                Competing interests: No competing interests were disclosed.

                Competing interests: No competing interests were disclosed.

                Author information
                https://orcid.org/0000-0002-9873-5376
                https://orcid.org/0000-0001-6393-8539
                https://orcid.org/0000-0002-1036-6044
                https://orcid.org/0000-0001-5967-9159
                https://orcid.org/0000-0002-6636-0493
                Article
                10.12688/hrbopenres.13067.1
                7327728
                32666039
                897b22f2-fcb7-4180-8535-4e31815a14f6
                Copyright: © 2020 Murphy E et al.

                This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 1 June 2020
                Funding
                Funded by: Health Research Board
                Award ID: PPI-2017-001
                Health Research Board Ireland [PPI-2017-001].
                The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Open Letter
                Articles

                public and patient involvement,ppi,covid-19
                public and patient involvement, ppi, covid-19

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