Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study

Melchior, Inge; Heijden, Anouk van der; Stoffers, Esther; Suntjens, Frits; Moser, Albine

doi:10.1111/hex.13186

Cited by 5 publications

(7 citation statements)

References 17 publications

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“…Compensation is essential to recognizing patient research partner contributions to health research projects 38 . Similar to our findings, patient research partner relationships are known to flourish in a culture of trust 39 . Transparency is essential to trust and considered relational and social processes are essential in fostering effective engagement within research teams 16,18 .…”

Section: Discussionsupporting

confidence: 75%

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations

Nielssen,

Santana,

Pokharel

et al. 2023

Health Expectations

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BackgroundInclusiveness, Support, Mutual Respect and Co‐Build are the four pillars of patient engagement according to the Strategy for Patient‐Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled ‘Re‐Purposing the Ordering of Routine laboratory Tests (RePORT)’.MethodsResearchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co‐chairs of the PAC. Patient research partners were offered training, support and tailored modalities of compensation to actively engage with the PAC. Regular member check‐ins occurred through reflexivity and a formal evaluation of PAC member engagement.ResultsThe PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course‐changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co‐chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co‐design approaches yielded rich research outputs.ConclusionsCollaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co‐Build for meaningful patient engagement.Patient or Public ContributionPatient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co‐development of a patient engagement strategy using a Human‐Centered Design process.

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Section: Discussionsupporting

confidence: 75%

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations

Nielssen,

Santana,

Pokharel

et al. 2023

Health Expectations

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“…Using authorship listing and information in the contribution and affiliation sections, 33 articles were identified as being co-authored by PRs. For one article we were unable to determine whether PRs had been co-authors, and thus classified this [ 51 ] as non-co-authored. Articles described inviting PRs with lived experience of the condition or service under investigation, yet in 5 articles the authors did not report any details on who the PRs were or reasons for selecting them [ 2 , 21 , 58 , 64 , 69 ].…”

Section: Resultsmentioning

confidence: 99%

“…Time The more steps the PRs are involved in, the more the influence of the PRs on the project and partnerships was reported as strong [ 9 , 39 , 51 , 53 ] suggesting a longitudinal causality. Time was also mentioned as a factor in shorter partnerships as time spent on informal talks pre- and post-meeting helped build the relationship [ 15 ] and allowed for time spent together to reflect during the process [ 41 ].…”

Section: Resultsmentioning

confidence: 99%

“…However, time could also be a challenge, for example due to time pressure of other competing research activities [ 62 ]. Activities were less successful when “substantial” time and efforts were needed to organize and plan meetings [ 51 ] and when PRs had to spend time on activities in between meetings [ 9 ]. It was also mentioned that moving beyond consultation with PRs required extra time and workload [ 8 ].…”

Section: Resultsmentioning

confidence: 99%

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Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research

Karlsson,

Kragh-Sørensen,

Børgesen

et al. 2023

Res Involv Engagem

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Background Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships. Methods Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.’s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article. Results Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time. Conclusions Researchers’ decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients’ contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.

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“…There are growing efforts across the world to involve patients in clinical research and the dissemination of published results across all disciplines [39]. Melchior et al described a palliative care initiative in The Netherlands in which they trained patients and lay members of the public to prepare them for participation in research [40]. The investigators found that due to this training program, their project aims became more relevant to the intended audience.…”

Section: Patient Engagement In Melanoma Researchmentioning

confidence: 99%

Patient Engagement in Cancer Research from the Patient’s Perspective

Spears

2021

Future Oncol.

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Patient engagement in cancer research involves the inclusion of patient voices into research to ensure knowledge generated will improve the lives of all cancer patients. Patients involved in research have an interest in science, an experience with cancer and want to work directly with researchers to ensure patient concerns are heard. There are many opportunities for patient engagement in laboratory and clinical research, throughout the lifecycle of the project from conception to completion. Researchers and patient advocates can take practical steps to ensure their engagement is effective and meaningful. Adding the patient voice in research honors those who have died, so future cancer patients have access to new therapies to live longer and better lives.

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Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study

Cited by 5 publications

References 17 publications

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations

Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research

Patient Engagement in Cancer Research from the Patient’s Perspective

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