Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers. Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.

Patient and public engagement in decision-making regarding infectious disease outbreak management: an integrative review

IntroductionWorldwide, people experience the effects of infectious disease outbreaks on a regular basis. These effects vary from direct impact of the virus on health, to indirect impact of control measures on day-to-day life. Yet, incorporating the experiences, views and ideas of patients and the public in decision-making in managing outbreaks does not take place on a structural basis. However, this might be beneficial. We examined the current incorporation of patient and public engagement (PPE) in decision-making regarding outbreak management (OM).MethodsA systematic search was executed in PubMed, Embase, APA PsycInfo, Web of Science, Scopus and other literature sources. Papers describing PPE in decision-making regarding OM on a collective level (group-level) were included. Relevant information about study characteristics, methods, impact and embedment of PPE in decision-making in OM was collected.ResultsThe search yielded 4186 papers of which 13 were included. The papers varied in study context and design. Remarkably, no substantial patient engagement was identified. Overall, public engagement (PE) in decision-making regarding OM was mostly executed by a mix of methods, for example, workshops, interviews and surveys. Knowledge and idea sharing between the public and experts was deemed beneficial for establishing well-informed discussions. The efforts resulted in either direct implications for practice or recommendations in policy papers. Most papers described their efforts as a first step. No structural embedment of collective PE in decision-making regarding OM was identified. Furthermore, the quality of most papers was low to moderate due to insufficient description.ConclusionOverall, various practices for PE can be potentially valuable, but structural embedment in OM decision-making on a collective level was low. Before PPE can be permanently embedded in OM, more evidence on its impact needs to be collected. Furthermore, reporting on the engagement process and used terminology needs to be harmonised to ensure reproducibility and transparency.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: Building consensus on common evaluation criteria and indicators for PPE in research; Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

PARE0029 THE JOURNEY FROM PATIENT AND PUBLIC ENGAGEMENT (PPE) TO INVOLVEMENT: FACILITATING PATIENT PARTNER RESEARCH WORKSHOPS WITH A FOCUS ON FIBROFOG IN FIBROMYALGIA

Background:The Bath Institute for Rheumatic Diseases (BIRD), a registered charity in the United Kingdom (UK), supports research, education and patient engagement for the benefit of people with rheumatic diseases. Event feedback from two Fibromyalgia Information Days showed patients valued the sessions and were keen to be involved in research. Fibrofog in fibromyalgia was identified by patients as one topic of interest.Objectives:To facilitate Patient Research Partner Workshops to generate research questions and inform the design of clinical research into fibrofog in fibromyalgia.Methods:Three Patient Research Partner Workshops, focusing on fibrofog in fibromyalgia, were run between January 2018 and April 2019. All were co-facilitated by a clinician, SD, and BIRD Patient and Public Engagement (PPE) lead,MB. Ethical approval was not required1. Patients were invited to participate by email. A Patient Partner Information Sheet accompanied the workshop invitation. Audio recordings of the discussions were made to aid data capture, following informed written consent by all workshop participants. Travel expenses were offered to all participants.Results:25 (n=25) women with fibromyalgia attended the workshops. Workshop 1 (n= 5) explored, ‘What areas do you think we should research around fibrofog in fibromyalgia’? Patient partners felt research into fibrofog in fibromyalgia was needed to identify and validate symptoms, and to inform discussions with healthcare professionals. They also called for research into coping strategies to help with fibrofog symptoms. This reflected similar patient calls for research into fibrofog in fibromyalgia2.Workshop 2 (n=10) and Workshop 3 (n=9) explored ‘How do you think we should research fibrofog in fibromyalgia’? Both workshops identified a broad range of research questions and designs, reflecting individual experiences, knowledge and symptom severity. Suggested research questions included: How severe is fibrofog for each person? What triggers fibrofog? How does fibrofog affect daily tasks? How does fibrofog affect work? What do people with fibromyalgia, their partners, family members and healthcare professionals understand about fibrofog?Suggested data collection methods included interviews, focus groups and questionnaires. Use of online surveys or interviews had mixed responses. This reflected computer literacy skills and access to hardware. Discussions around recruitment of participants to future studies revealed a wealth of local knowledge including access to community venues and healthcare facilities, support groups and local networks.Participants were very satisfied with the workshops, finding them helpful, informative and thought provoking. All wanted to continue their involvement in research.Conclusion:Patient Research Partner Workshops are integral to the generation and delivery of clinical research into fibrofog in fibromyalgia. Research designs need to offer multiple methods of data collection to be as inclusive as possible. Next steps will be to formally recruit Patient Research Partners to co-develop a research grant application to explore fibrofog in fibromyalgia.References:[1]INVOLVE. Public involvement in research and research ethics committee review V.2 Southampton: INVOLVE/Health Research Authority; 2016 [Available from:https://www.invo.org.uk/wp-content/uploads/2016/05/HRA-INVOLVE-updated-statement-2016.pdf.[2]Fitzcharles, M.-A., Brachaniec, M., Cooper, L., Dubin, R., Flynn, T., Gerhold, K., Häuser, W., Cowan, K., Laupacis, A., Marleau, R., Milot, M., Szajcz-Keller, N., Sumpton, J., Walsh, Z. & El-Gabalawy, H. 2017. A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals.Canadian Journal of Pain,1, 137-147.Acknowledgments:This work was supported by the National Institute for Health research [ICA-PCAF-2018-01-078 to SD]Disclosure of Interests:Sandra Derham: None declared, Mel Brooke Grant/research support from: Sponsorship from Lilly to BIRD for the Patient and Public Engagement Programme, Sponsorship from Sanofi to BIRD for the Healthcare Professionals Education Programme.

Ethics and research in psychiatry: Engagement with patients and public

This chapter explores the ethical issues that arise in psychiatric research in relation to engagement with patients and the general public. Over the past decade, there has been a significant shift in psychiatric and other medical research that places an emphasis on the engagement and involvement of patients and the public. This shift has resulted in changes in the expectations of the way research is conducted and disseminated, specifically regarding the level of scientific knowledge that should be accessible to service users and the public. The chapter begins by making the distinction between patient and public engagement and patient and public involvement. It then discusses basic ethical principles as they relate to engagement, and provides examples of how patient and public engagement is situated within psychiatric research agendas, particularly as it relates to participatory action approaches. It concludes with three brief case studies of engagement approaches in psychiatric research with discussion of ethical issues that may arise in different types of engagement.

‘Spending the day with your Family Health Team’: rapid ethnography of a patient-centred quality improvement event

BackgroundPrimary care practices have started to explore different methods of engaging with patients to advance quality improvement. This approach leverages the strengths of citizen engagement; however, there has been a lack of empirical research to understand the impact of such an approach from the patient perspective.AimTo understand how citizen engagement can inform quality improvement in family practice.Design & settingA single-centre, rapid ethnographic evaluation of a patient engagement event.MethodTen thousand email invitations were sent and posters put up in Family Health Team (FHT) waiting rooms, resulting in 350 patient responses and the purposive recruitment of 36 participants. Observation and key informant interviews were used to collect data. The data corpus was analysed according to ethnographically-informed thematic analysis techniques.ResultsAnalysis of the full set of field notes, patient interviews, and informal conversations with the FHT staff revealed three factors that impacted on the success of the patient engagement event: setting the stage, the power of storytelling, and the value of reframing the patient role.ConclusionThe present study highlights three components of patient and public engagement approaches — the importance of setting the proper stage, storytelling as a tool, and reframing the patient role in healthcare delivery — which may provide useful guidance to those considering similar patient and public engagement events.

People with lived experience at the centre of Canadian Stroke Best Practice Recommendations: A model for guideline developers

Background Actively engaging people with lived experience (PWLE) in stroke-related clinical practice guideline development has not previously been implemented and evaluated despite international efforts to incorporate patient and public engagement. The purpose of this pilot project was to evaluate the feasibility, perceived value and effectiveness of a new model, the Community Consultation and Review Panel, to actively engage PWLE in the writing and review of Canadian Stroke Best Practice Recommendations (CSBPR).Methods Members of the public with lived experience relevant to CSBPR module topics, including people with stroke, family members and caregivers, were recruited to participate in two CSBPR Community Consultation and Review Panels (CCRP). The CCRP ran in parallel to scientific writing groups updating two components of the CSBPR Rehabilitation, Recovery and Community Participation module – Rehabilitation and Recovery following Stroke and Transitions and Community Participation following Stroke . With the aid of an inter-group liaison, both the scientific writing group and CCRP reviewed the updated evidence and CCRP participants added insights and context based on their personal experiences. We utilized the Patient and Public Engagement Evaluation Tool (PPEET) to obtain CCRP participant feedback.Results This model was found to be feasible, requiring 3-4 hours of staff time per week. CCRP participants rated “strongly agree” or “agree” to 14 PPEET questions indicating that they perceived the CCRP to be a positive experience and effective process, and their participation had an impact. Responses to the open-ended questions revealed that CCRP participants felt that their input and recommendations on the CCSPR were acknowledged and would benefit stroke care in Canada.Conclusions The overall success of this pilot project established the feasibility and perceived benefit of employing a participatory and collaborative model to actively engage PWLE in stroke-related clinical practice guideline development. The values, experiences and recommendations of PWLE were able to be effectively incorporated into CSBPR content to enable lived experience specific context and considerations to augment the existing scientifically rigorous writing and review process. This model is now the standard practice for all future CSBPR module development and updates and could be adapted for guideline development across other disciplines.

Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.