Topic refinement for Cochrane Reviews- working with partners to reach stakeholders

Topic refinement for Cochrane Reviews – working with partners to reach stakeholders: a case study Background This presentation describes a case study in Epilepsy and Movement Disorders review topic refinement - a process combining prioritisation of topics and the outcomes used to explore those topics. Agreeing topics for and relative importance of systematic reviews is an important part of the review production cycle. Difficult decisions sometimes need to be made as capacity in limited and there will competing ideas for reviews. Stakeholder engagement in topic refinement is just one aspect of the review process that needs careful thought and planning, not only in terms of methods, but also consideration of scope of the refinement and resources to be applied We will describe how we conducted stakeholder engagement that helped to refine, select and understand the importance of a selection of systematic reviews in epilepsy and Parkinson’s Disease. This topic refinement was part of a programme of work funded by NIHR (16/114/26). What we did When we refer to stakeholders in this project, we mean people with direct experience of the health conditions, such as people with epilepsy or Parkinson’s Disease, carers and health professionals. We engaged with stakeholders to seek their preferences for Cochrane systematic review topics relating to interventions and care for people with Epilepsy or Parkinson’s Disease. We used a shortlist of review topics developed by the review group editorial base in consultation with clinical experts. There were 26 shortlisted topics on epilepsy and 11 for Parkinson’s Disease. We used 2 separate web-based questionnaires for the topic refinement. People were asked to choose their top 5 review topics from the shortlists, rank these in order of priority and, finally, to comment on the reasons for their choices using free text boxes. A distinct feature of our approach was that the same questionnaire also invited people to suggest additional topics, rank these and share reasons for their suggestions. How we did it We carefully considered our approach to topic refinement, referring to approaches described by Cochrane Priority Setting Methods Group, James Lind Alliance (JLA), NICE and the REPRISE checklist and available digital technologies. We also developed partnerships with 2 key stakeholder groups representing people with Epilepsy or Parkinson’s Disease (Epilepsy Action, Parkinson’s UK). As a team, we agreed to focus our approach on the use of web-based questionnaires, promoted by our 2 partner groups and targeted social media activity. We focussed primarily on people living with either epilepsy or Parkinson’s, carers and family members, but health and social care professionals could also complete the survey. We used email from our stakeholder partners to their membership and social media to publicise the surveys and encourage participation. We also used a variety of visual media to catch people’s attention and direct them to the surveys. We ensured that the survey had links to infographics and materials (Cochrane and others) that explained the context for the survey was to informed priorities for Cochrane Systematic Reviews. Ethical approval was obtained from the University of Liverpool (Health and Life Sciences Research Ethics Committee 3087). What has been the output/impact? Overall response rates were excellent, and comparable numbers achieved for established organisations focusing on priorities (such as JLA). For the Epilepsy survey there were 569 survey participants and for the Parkinson’s survey, 470 people took part. For epilepsy ,336 people answered the question ‘Tell us more about why these topics are a priority for more research using a systematic review’. Responses ranged from descriptions of adverse effects of treatments, comments on the balance of control of conditions and adverse effects and uncertainties on effectiveness in particular groups. In the Parkinson’s survey, 272 people responded yielding a similarly rich source of data about choices. These are being analysed. What can others learn? • Options available to conduct topic refinement (prioritisation) at a good quality and scale within limited resources. • Practical advice on how to conduct successful online engagement for priority setting reviews, from a case study with people with Epilepsy or Parkinson’s Disease and their carers and family members. • Ways this exercise is contributing to Review Group discussions about topic choices and key areas to explore within their reviews

Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research themes.

BackgroundConversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not researchers.MethodsGenerally, to address this gap, and specifically, to inform future research for CLS, we carried out a rapid review of published research priority sets covering LGBTQ+ topics, and an online workshop to prioritise identified themes.ResultsRapid review: results. The rapid review identified 18 LGBTQ+ research priority sets. Some focussed on specific populations such as women or men, younger or older people or people living within families. Five addressed transgender and gender non- conforming populations. All of the research priority sets originated from English-speaking, high and middle-income countries (UK, US, Canada, and Australia), and date from 2016 onwards. Prioritization approaches were wide-ranging from personal commentary to expert workshops and surveys. Participants involved in setting priorities mostly included research academics, health practitioners and advocacy organisations, two studies involved LGBTQ+ public in their process. Research priorities identified in this review were then grouped into themes which were prioritised during the workshop. Workshop: results. For the workshop, participants were recruited using local (Cambridge, UK) LGBTQ+ networks and a national advert to a public involvement in research matching website to take part in an online discussion workshop. Those that took part were offered payment for their time in preparing for the workshop and taking part. Participants personal priorities and experiences contributed to a consensus development process and a final ranked list of seven research themes and participants' experiences of healthcare, mental health advocacy, care homes, caring responsibilities, schools and family units added additional context.ConclusionsFrom the workshop the three research themes prioritised were: healthcare services delivery, prevention, and particular challenges / intersectionality of multiple challenges for people identifying as LGBTQ+. Research themes interconnected in many ways and this was demonstrated by the comments from workshop participants. This paper offers insights into why these priorities were important from participants' perspectives and detail about how to run an inclusive and respectful public involvement research exercise. On a practical level these themes will directly inform future research direction for CLS

Personalised Ambient Monitoring (PAM) for People with Bipolar Disorder

This paper presents the architecture and preliminary trial results of a monitoring system for patients with bipolar disorder containing environmental and wearable sensors

The Gift:Transforming Lives through Organ Donation

It is my great pleasure to introduce this comic. Our project originated from an honest conversation with my friend and colleague Prof Chris Murray: how to communicate complex issues surrounding the issue of organ donation? Over the last seven years I have had the honour of being an ambassador for the Organ Donation campaign by telling my son, Andrew’s, story.Through my role as an Organ Donation ambassador I meet courageous and selfless people. Some are in desperate need of hope, some are in the position to provide hope, and those who, through their professionalism and dedication, transform lives.Our sincere thanks for the support of the following organisations: University of Dundee; the NHS Blood and Transplant Specialist Nurses in Organ Donation; Dundee Comics Creative Space; Good Life, Good Death, Good Grief, and the Organ Donation Comics team. it is only through their support that this projectcame to fruition.In the following pages we share heartfelt stories and life experiences related to organ donation. By doing so we hope to bring awareness to a wider audience and prompt honest conversations about organ donation.Finally, I would like thank my sons Andrew and Stuart for warming my heart. Through tears and laughter we present to you… The Gift

Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance ‘Top 10s’

Introduction: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce ‘Top 10’ lists of health and care research priorities through a structured, shared decision‐making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. Aim: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. Methods: Our analysis included ‘Top 10’ research priorities produced by UK‐based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. Results: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being ‘generic health relevance’ (22%), ‘mental health’ (18%) and ‘musculoskeletal’ (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top‐level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. Conclusion: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. Patient or Public Contribution: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Stakeholder engagement has become widely accepted as a necessary component of guideline development and implementation. While frameworks for developing guidelines express the need for those potentially affected by guideline recommendations to be involved in their development, there is a lack of consensus on how this should be done in practice. Further, there is a lack of guidance on how to equitably and meaningfully engage multiple stakeholders. We aim to develop guidance for the meaningful and equitable engagement of multiple stakeholders in guideline development and implementation. METHODS: This will be a multi-stage project. The first stage is to conduct a series of four systematic reviews. These will (1) describe existing guidance and methods for stakeholder engagement in guideline development and implementation, (2) characterize barriers and facilitators to stakeholder engagement in guideline development and implementation, (3) explore the impact of stakeholder engagement on guideline development and implementation, and (4) identify issues related to conflicts of interest when engaging multiple stakeholders in guideline development and implementation. DISCUSSION: We will collaborate with our multiple and diverse stakeholders to develop guidance for multi-stakeholder engagement in guideline development and implementation. We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders. An invited group of representatives from all stakeholder groups will discuss the results of the survey at a consensus meeting which will inform the development of the final guidance papers. Our overall goal is to improve the development of guidelines through meaningful and equitable multi-stakeholder engagement, and subsequently to improve health outcomes and reduce inequities in health

Factors to Consider During Identification and Invitation of Individuals in a Multi-stakeholder Research Partnership

BACKGROUND: Health research teams increasingly partner with stakeholders to produce research that is relevant, accessible, and widely used. Previous work has covered stakeholder group identification. OBJECTIVE: We aimed to develop factors for health research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership, with the aim of forming equitable and informed teams. DESIGN: Consensus development. PARTICIPANTS: We involved 16 stakeholders from the international Multi-Stakeholder Engagement (MuSE) Consortium, including patients and the public, providers, payers of health services/purchasers, policy makers, programme managers, peer review editors, and principal investigators. APPROACH: We engaged stakeholders in factor development and as co-authors of this manuscript. Using a modified Delphi approach, we gathered stakeholder views concerning a preliminary list of 18 factors. Over two feedback rounds, using qualitative and quantitative analysis, we concentrated these into ten factors. KEY RESULTS: We present seven highly desirable factors: ‘expertise or experience’, ‘ability and willingness to represent the stakeholder group’, ‘inclusivity (equity, diversity and intersectionality)’, ‘communication skills’, ‘commitment and time capacity’, ‘financial and non-financial relationships and activities, and conflict of interest’, ‘training support and funding needs’. Additionally, three factors are desirable: ‘influence’, ‘research relevant values’, ‘previous stakeholder engagement’. CONCLUSIONS: We present factors for research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership. Policy makers and guideline developers may benefit from considering the factors in stakeholder identification and invitation. Research funders may consider stipulating consideration of the factors in funding applications. We outline how these factors can be implemented and exemplify how their use has the potential to improve the quality and relevancy of health research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11606-022-07411-w

Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance ‘Top 10s’

Introduction: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce ‘Top 10’ lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. Aim: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. Methods: Our analysis included ‘Top 10’ research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. Results: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being ‘generic health relevance’ (22%), ‘mental health’ (18%) and ‘musculoskeletal’ (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. Conclusion: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. Patient or Public Contribution: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings

Establishing a core outcome set for peritoneal dialysis : report of the SONG-PD (standardized outcomes in nephrology-peritoneal dialysis) consensus workshop

Outcomes reported in randomized controlled trials in peritoneal dialysis (PD) are diverse, are measured inconsistently, and may not be important to patients, families, and clinicians. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative aims to establish a core outcome set for trials in PD based on the shared priorities of all stakeholders. We convened an international SONG-PD stakeholder consensus workshop in May 2018 in Vancouver, Canada. Nineteen patients/caregivers and 51 health professionals attended. Participants discussed core outcome domains and implementation in trials in PD. Four themes relating to the formation of core outcome domains were identified: life participation as a main goal of PD, impact of fatigue, empowerment for preparation and planning, and separation of contributing factors from core factors. Considerations for implementation were identified: standardizing patient-reported outcomes, requiring a validated and feasible measure, simplicity of binary outcomes, responsiveness to interventions, and using positive terminology. All stakeholders supported inclusion of PD-related infection, cardiovascular disease, mortality, technique survival, and life participation as the core outcome domains for PD