
 This case study drawn from our collective experience in Northern Ireland presents a relatively unique approach that considers the role of wider contextual and organisational factors in supporting or inhibiting research into social work and social care practice. It has been written by members of the Building A Research Community Group (hereafter referred to as Research Community) established in 2019. The Research Community was built on the premise that partnership and co-production working between service delivery organisations, researchers and academia, and service users and carers is an essential underpinning to effective ‘practitioner research’, just as it is to the development of robust practitioner-relevant education and training. Using our experience over the last decade, we argue that bridging the gap between scientific evidence and practice requires leadership and the development of a supportive organisational culture that is receptive to learning and change. Highlighting both successes and challenges, along a journey spanning from 2014, we focus on the importance of developing a research strategy and realistic implementation plan accompanied by resource allocation. By sharing our journey in this case study, we hope that others across other geographical contexts can learn from our experience and are encouraged to share their own experiences.

Building a Research Community to Bring Evidence into Practice: Case Study

This chapter examines the experiences, challenges, and strategies involved in conducting meaningful community-engaged research with Lesbian, Gay, Bisexual, Transgender, queer/questioning and other sexuality and gender diverse identities (LGBTQ+) communities across three Asia-Pacific contexts: Australia, Hong Kong, and Singapore. It draws on the multidisciplinary expertise and lived experiences of collaborators working in health, social sciences, and community leadership. Addressing the complexities of multicultural LGBTQ+ health and migration research, the chapter explores structural, interpersonal, and conceptual challenges while critically interrogating Western-centric frameworks of gender, sexuality, and culture. Key strategies for fostering equitable, culturally safe research partnerships are presented, emphasising the importance of centring the voices and priorities of marginalised LGBTQ+ communities by actively involving them throughout the research process, from conception to dissemination. The chapter is grounded in insights from a participatory focus group facilitated by young, culturally diverse LGBTQ+ leaders. Through critical reflections, it identifies opportunities and barriers to advancing community-centred research that can support community well-being and shape inclusive policy and practice. 

International Community-involved LGBTQ+ Health Research: Multidisciplinary Reflections and Strategies

Abstract Background and aims There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it can be difficult to know where to start and how to go about such involvement activities. The purpose of this perspective piece was to share experiential insight of the experience of a patient involvement program such that others can learn from this experience. Body This is a co-authored perspective piece centred on the experience of MGH, a patient who has had hip replacement surgery, and DG, a medical student completing a PhD, participating in a Research Buddy partnership over the course of over 3 years. The context in which this partnership took place was also described to facilitate comparison with readers’ own circumstances and contexts. DG and MGH met regularly to discuss, and work together on, various aspects of DG’s PhD research project. Reflexive thematic analysis was conducted on reflections from DG and MGH regarding their experience in the Research Buddy program to synthesise nine lessons which were then corroborated with reference to published literature on patient involvement in research. These lessons were: learn from experience; tailor the program; get involved early; embrace uniqueness; meet regularly; build rapport; ensure mutual benefit; broad involvement; regularly reflect and review. Conclusions In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement. 

/pdf/research-buddy-partnership-in-a-md-phd-program-lessons-20d7bdtf.pdf

Research Buddy partnership in a MD–PhD program: lessons learned

ABSTRACT The involvement of people with lived experience in the design, implementation and evaluation of services has grown significantly in recent years. In parallel, the evidence base for best practice in peer research, as this approach is described, is also expanding. Sharing two practice examples, the authors reflect on key learning emerging from their work with peer researchers. They describe the importance of developing an approach that is well planned, adequately resourced, and flexible, and identify other supports required to ensure peer researchers have a positive experience and can make a meaningful contribution. This article will be of interest to readers wishing to include the authentic voice of service users in research and will be particularly relevant to those involved in commissioning or delivering health and social care research and evaluations focused on services for children and young people.

Reflecting on the Involvement of Peer Researchers in Service Evaluations*

Patient engagement in research is the meaningful and active involvement of patient/caregiver partners (i.e., patients and their family/friends) in research priority-setting, conduct, and governance. With the proper support, patient/caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement. This participatory qualitative study answered the question: What are the facilitators and barriers to patient engagement experienced by patient/caregiver partners in a Canadian research context? Participants were N = 13 patient/caregiver partners (Mage = 62 years, 85% women; 100% White) from four provinces who completed 60-90-minute semi-structured online interviews. The interviews were transcribed verbatim. One researcher and one patient/caregiver partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using Participatory Theme Elicitation alongside seven patient/caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives. Four themes depicted factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations, (2) Demonstrating the value and impact of engagement, (3) Psychological safety, and (4) Educating the public, patient/caregiver partners, and researchers. We then discuss how barriers to enacting these four factors can be mitigated and provide a practical checklist of considerations for both researchers and patient/caregiver partners for engaging together throughout the research cycle. Researchers and patient/caregiver partners should draw from our findings to mitigate engagement barriers and facilitate meaningful engagement experiences. 

Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: A Participatory Qualitative Study (Preprint)

'Getting Involved in Research' was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services.The evaluation of participants' perceptions adopted an exploratory mixed method research design and aimed to gather data to provide an in-depth understanding of the participants' experience of 'Getting Involved in Research' through the co-researchers' analysis of qualitative data using Participatory Theme Elicitation (PTE). PTE was used with the qualitative data to promote co-analysis by the course development group; analyses from an independent academic was also used to further validate the method of PTE.Thirty-five participants in total participated in 'Getting Involved in Research'. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Six core themes were identified using the PTE approach: (1) A Meaningful Participatory Approach (2) Increasing the Confidence of Participants (3) Interactive Online Format (4) An Ambient Learning Environment (5) A Desire for Future Courses (6) A Balance of Course Content and Discussion. Participants in 'Getting Involved in Research' reported that the content of the training was applicable, relevant, fostered awareness of research methods and anticipated that it would support their involvement in research.'Getting Involved in Research' has contributed innovatively to the evidence base for how to engage with and motivate those who have experience of health and social care to become actively involved in research. This study demonstrates that 'Getting Involved in Research' may be helpful to train those with lived experience and their care partners however, further research following up on the application of the course learning would be required to ascertain effectiveness.Future research should explore methods to apply research skills in practice to further develop participants' confidence in using the skills gained through 'Getting Involved in Research'.The aim of this study was to gather information to help us understand the experience of participants’ undertaking a research course called ‘Getting Involved in Research’. A group of individuals including those with lived experience of health and social care services, academics, community and voluntary sector workers and a representative from the Department of Health in Northern Ireland worked together to develop a course to encourage and support people to engage with research. The ‘Getting Involved in Research’, course was designed to provide an understandable introduction to research for those people with lived experience of health and social care. We did this because research in health and social care sector should involve the patients and public who it is intended to help. The evaluation of the course had two distinct phases; we asked course participants to complete a survey before and after the course (pre- and post-course survey) and also asked them to complete a journal reflecting on their experiences after each lecture. This paper gives an overview of the profile of course participants and their responses to the survey questions. The survey answers were analysed using an approach to analysing information which encourages involvement from people with a range of experience of research methods, (known as Participatory Theme Elicitation). Thirty-five participants in total participated in ‘Getting Involved in Research’. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Participants in ‘Getting Involved in Research’ reported that the content of the course was relevant, encouraged awareness of research methods and encourage their future involvement in research. 

/pdf/getting-involved-in-research-a-co-created-co-delivered-and-275d48wa.pdf

‘Getting involved in research’: a co-created, co-delivered and co-analysed course for those with lived experience of health and social care services

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‘Getting involved in research’: a co-created, co-delivered and co-analysed course for those with lived experience of health and social care services