Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects

AbstractIntroductionParticipatory research is a study method that engages patient partners in research programs from study design through to completion. It has seldom been used in diabetes health services research. Our objectives were to describe the process and challenges of conducting a patient-engagement project and to highlight the experiences of patient participants and academic researchers.Research Design & MethodsWe recruited PWLEH and diabetes in Toronto, Canada to be patient partners. Group members were asked to commit to attending biweekly meetings. We undertook two major research projects: Concept mapping to choose a research focus; and photovoice to explore accessing healthy food while homeless. We used a convergent mixed methods design to evaluate their experience.ResultsA diverse group of 8 PWLEH had an average attendance of 82% over 21 meetings – despite this success, we encountered a number of challenges to conducting this research. Group members reported that participation improved their ability to be self-advocates in their diabetes care and provided them with tangible skills and social benefits. Group members stated that they valued being involved in all aspects of the research, in particular knowledge translation activities, including advocating for nutritious food at shelters; presenting to stakeholders; and meeting with policy makers.ConclusionsThe use of participatory patient engagement research methods enables academic researchers to support community members in pursuing research that is pertinent to them and which has a positive impact. In our study, group members contributed in meaningful ways and also valued the experience.What is already known about this subject?Patient oriented research is important to public health research as it helps with the development of relevant interventions and knowledge translation.Participatory research is a form of research that maximally involves patients in all phases of the research.Participatory research has rarely been used in research on diabetes and diabetes-related interventions.What are the new findings?Patient engagement is important for studies involving socially disadvantaged populations with diabetes.Community members involved in research contribute substantially to research projects but also find the experience to be enriching and valuable.How might these results change the focus of research or clinical practice?Those who conduct research with and develop programs to provide diabetes care, especially to socially disadvantaged populations, should involve community members through all phases of the process to ensure the intervention is maximally useful for patients.

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Patient Engagement in Pediatric Rheumatology Research

Rheumatic Disease Clinics of North America ◽

10.1016/j.rdc.2021.09.013 ◽

2022 ◽

Vol 48 (1) ◽

pp. 1-13

Author(s):

Vincent Del Gaizo ◽

Melanie Kohlheim

Keyword(s):

Patient Engagement ◽

Pediatric Rheumatology ◽

Rheumatology Research

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Patient participation in ERS guidelines and research projects: the EMBARC experience

Breathe ◽

10.1183/20734735.009517 ◽

2017 ◽

Vol 13 (3) ◽

pp. 194-207 ◽

Cited By ~ 9

Author(s):

James D. Chalmers ◽

Alan Timothy ◽

Eva Polverino ◽

Marta Almagro ◽

Thomas Ruddy ◽

...

Keyword(s):

Clinical Research ◽

Patient Engagement ◽

Clinical Guidelines ◽

Patient Involvement ◽

Research Collaboration ◽

Clinical Care ◽

List Type ◽

Research Projects ◽

Educational Activities ◽

Specific Patient

The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme.From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies.Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement.Educational aimsTo understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician’s perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient’s perspective, in order to meaningfully involve patients in clinical projects.

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Engaging patients as partners in health research: Lessons from BC, Canada

Healthcare Management Forum ◽

10.1177/0840470417741712 ◽

2018 ◽

Vol 31 (2) ◽

pp. 41-44 ◽

Cited By ~ 4

Author(s):

Bev J. Holmes ◽

Stirling Bryan ◽

Kendall Ho ◽

Colleen McGavin

Keyword(s):

British Columbia ◽

Patient Engagement ◽

Retrospective Review ◽

Health Research ◽

Research Unit ◽

Research Projects ◽

Body Of Knowledge ◽

Lay People ◽

Training And Support ◽

Oriented Research

Canada is seeing increased interest in engaging patients in health research, recognizing the potential to improve its relevance and quality. The momentum is promising, but there may be a tendency to ignore the challenges inherent when lay people and professionals collaborate. We address some of these challenges as they relate to recruitment, training, and support for patients at the British Columbia (BC) Support for People and Patient-Oriented Research Unit, part of Canada’s Strategy for Patient-Oriented Research. A retrospective review of a telehealth project demonstrates that, as well as the practical elements of recruitment, training, and support, attention must be paid to issues of credibility, legitimacy, and power when engaging patients. We propose that all patient-oriented research projects would benefit from using a similar framework to guide patient engagement planning and implementation, helping to anticipate and mitigate challenges from the outset. Projects would ideally also include the study of patient engagement methods, to add to this important body of knowledge.

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Patients’ engagement in primary care research: a case study in a Canadian context

Research Involvement and Engagement ◽

10.1186/s40900-020-00238-x ◽

2020 ◽

Vol 6 (1) ◽

Author(s):

Divya Kanwar Bhati ◽

Michael Fitzgerald ◽

Claire Kendall ◽

Simone Dahrouge

Keyword(s):

Primary Care ◽

Health Care ◽

Patient Engagement ◽

Research Process ◽

Research Projects ◽

Primary Care Research ◽

Care Research ◽

Primary Health ◽

Oriented Research

Plain English summary Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the outcomes on engagement and actually how it affects research. In Canada, the Canadian Institutes of Health Research has a Strategy for Patient-Oriented Research (SPOR), which in 2016 funded Ontario’s INSPIRE-PHC centre of excellence and its Patient Engagement Resource Centre (PERC). PERC conducted an online survey of the three INSPIRE-PHC studies that engaged patients to guide their research. We found that patient partners (PPs) were positive about their experience during research meetings, the value of collaboration, and the support that was provided. They were more involved in early stages of their research projects than in ongoing research activities. PPs valued their experience and also felt they had improved the research process and outcomes. This case study showed how PPs perceive their roles, but a more diverse group of PPs might have more differences in their experience. Abstract Background Patient engagement in primary care research is increasing and is now an expectation in many countries and funding agencies. In Canada, the Canadian Institutes of Health Research (CIHR) has mandated that patients be included as partners to guide the research process. Ontario’s Patient Engagement Resource Centre (PERC) was established in 2016 by the INNOVATIONS STRENGTHENING PRIMARY HEALTH CARE THROUGH RESEARCH (INSPIRE-PHC), one of 12 centres of excellence in the province funded under the CIHR’s Strategy for Patient-Oriented Research (SPOR) initiative. PERC’s mission is to support the authentic engagement of patients in primary care research. The present case study examines patients’ experience of engagement in INSPIRE-PHC research studies. Methods PERC conducted a web-based evaluation survey across the three INSPIRE-PHC studies that engaged patient partners (PPs). We used data collection tools developed by McMaster University (the Public and Patient Engagement Evaluation Tool (PPEET)) and the Patient-Centred Outcomes Research Institute (Ways of Engaging- ENgagement ACtivity Tool (WE-ENACT)) to assess patient experience and areas of involvement. These included both closed- and open-ended questions. Results The quantitative data showed that PPs were positive about their experience during research meetings, the value of collaboration, and the support that was provided to facilitate engagement. Most of them were highly involved in the initial stages of their research projects but much less involved in operational activities. The qualitative findings showed that, overall, PPs valued their experience, felt prepared to contribute and that their contributions were welcomed. In particular, they considered that they had improved the research process and outcomes. The majority also reported that they had learned from the experience and found it valuable. Conclusions This case study shows that patients engaged in three primary care research studies found the experience to be positive and felt that they had contributed to the research. This study adds to the literature on the evaluation of patient engagement in primary health care research. However, a study of a more diverse sample of PPs might elucidate differences in experience that could enrich future patient engagement activities.

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