Current trends in patient and public involvement in cancer research: A systematic review

Pii, Kathrine Hoffmann; Schou, Lone; Piil, Karin; Jarden, Mary

doi:10.1111/hex.12841

Cited by 101 publications

(177 citation statements)

References 59 publications

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“…The barriers and facilitators to partnering with frail and/ or seriously ill patients (e.g., funding, infrastructure, role clarity, capacity building for both patients and researchers, structural inclusivity, trust and willingness to collaborate) are similar to those reported in other systematic and scoping reviews of patient engagement [2,12,22,28,[75][76][77]. When engaging frail and/or seriously ill patients as partners across the research cycle, the degree of illness and/or frailty, and potential instability in patients' health warrants more concern for [7, 45, 47, 51, 53-55, 62, 63, 69, 70] 11 (37%) Emotional/peer support [7, 51, 53, 55, 57, 62-64, 66, 69, 70] 5 (17%) Emotional vulnerability or emotional distress [7,47,55,71,72] 10 (33%) Incorporation of patients' priorities for research and outcomes [7,24,50,51,54,56,57,61,65,67] 8 (27%) Develop new knowledge and skills [45,51,55,59,60,62,63,71] 5 (17%) Physical/cognitive fatigue [7,47,53,55,72] 3 (10%) Acquire insights into disease and treatment [51,55,69] Researcher -Perceived Impacts…”

Section: Discussionsupporting

confidence: 55%

Partnering with frail or seriously ill patients in research: a systematic review

et al. 2020

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Background The expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from welcoming individuals from this patient population onto their teams. The aim was to synthesize the evidence on the engagement of frail and/or seriously ill patients as research partners across the research cycle. Methods A systematic review was conducted using PRISMA guidelines. A search strategy included MEDLINE®, EMBASE®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO from database inception to April, 2019. Eligible studies were peer-reviewed qualitative, quantitative, and mixed methods research reporting on the engagement of frail and/or seriously ill patients as partners on research teams. The Mixed Methods Appraisal Tool was used to appraise study quality. Narrative analysis was conducted. Results Of 8763 citations, 30 were included. Most studies included individuals with cancer on the research team (60%). Barriers included: lack of time and resources (50%), discontinuity in contribution (37%), and concerns for well-being (33%). Facilitators included: trust and mutual respect (60%), structural accessibility (57%), flexibility in timing and methods of engagement (43%), and attention to care and comfort, (33%). Perceived impacts for patients included: renewed personal sense of agency (37%) and emotional/peer support (37%). Impacts for researchers included sensitization to the lived experience of disease (57%) and an increased appreciation of the benefits of patient engagement (23%). Research design, execution, and outcomes, developed with patients, were deemed more suitable, relevant and reflective of patients’ priorities. Conclusions There is emerging evidence to suggest that research partnerships with frail and/or seriously ill patients can be achieved successfully. Patients mostly report benefit from partnering with research teams. Frailty and/or serious illness do present legitimate concerns for their well-being but appear to be successfully mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process. Systematic review registration The systematic review protocol was registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

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Section: Discussionsupporting

confidence: 55%

Partnering with frail or seriously ill patients in research: a systematic review

et al. 2020

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“…5,6 Public involvement within palliative care research can help to develop patient-focused research questions, 7,8 aid recruitment to studies, 8 and support dissemination of findings to a wider community. [7][8][9] Yet, there is a lack of evidence on the best approaches to public involvement in palliative care. Accessing the views of those who may have advanced illness and considerable disability can be challenging, and involvement can be time consuming and resource-intensive for both researchers and public contributors.…”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation

et al. 2020

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Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

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“…This may re ect the well-established evidence base of gendered differences in preferred learning styles and strategies [43,44]. However, it may also re ect the equally well-established evidence base that there is a gender and socio-cultural bias within the delivery of public input, where it has been shown that women, particularly in higher socioeconomic groups, were more willing to volunteer as public contributors [45]. The issue of representation in public input is frequently made more challenging when considered alongside issues such as remuneration, language, or access, all of which can act as barriers to those from poorer backgrounds or different socio-cultural backgrounds to become public contributors [46,47].…”

Section: Discussionmentioning

confidence: 98%

Realist Evaluation of Public Engagement and Involvement in Data-intensive Health Research

Hobbs¹,

Tully

2020

Preprint

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Abstract Background: High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. This is a complex research area, and portfolios of involvement have been suggested, but not yet evaluated, to support the role of public contributors. The study aim was to evaluate if and how membership of a data-intensive research public forum can act as a mechanism for enhancing members’ personal development. Our objective was to understand the circumstances and mechanisms that help to explain how, why and for whom involvement with a public forum enhanced those members’ personal development.Method: Qualitative data were collected from 15 current and previous members, via semi-structured interviews, notes from meetings, and consultations with and feedback from members. Data were critically compared, contrasted and reviewed until no new themes could be discerned and then condensed into context-mechanism-outcome (CMO) configurations. Realist evaluation was used to generate a theoretical and empirical appreciation of the contextual circumstances and mechanisms which help to explain the extent to which involvement with a public forum would enhance members’ personal development and, if so, how, why, and for whom.Results: Three CMO configurations were identified. All of them showed that using the portfolio facilitated growth in forum members’ personal development, but only where the members valued using the portfolio. This was particularly so for female members. Members valued the portfolio in one or more of three ways: as a tool to record and evidence activities, to facilitate reflective practice or as a guiding framework. Conclusions: Data analysis and consideration of the three CMO configurations suggests a refined middle range theory that ‘The use of a portfolio as a framework for learning in a public forum will facilitate members’ personal development if they value its use as a framework for learning’. Further work is needed to confirm these findings both elsewhere in data-intensive health research and in other complex research areas using public forums for PEI.

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Current trends in patient and public involvement in cancer research: A systematic review

Cited by 101 publications

References 59 publications

Partnering with frail or seriously ill patients in research: a systematic review

Partnering with frail or seriously ill patients in research: a systematic review

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation

Realist Evaluation of Public Engagement and Involvement in Data-intensive Health Research

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