Consumer involvement in cancer research: example from a <scp>C</scp>ancer <scp>N</scp>etwork

Arain, Mubashir; Pyne, Sarah; Thornton, Nigel; Palmer, Susan; Sharma, Ricky A.

doi:10.1111/hex.12143

Cited by 6 publications

(32 citation statements)

References 7 publications

(8 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Positive Impacts Negative Impacts 13 (43%) Improves/informs research design, execution, and translation [7, 51, 54-56, 59, 62-64, 69-72] 13 (43%) Research tools (e.g., consent and data collection form), processes (e.g., recruitment and retention), and methods are more relevant [7, 45-47, 51, 56, 57, 59, 62-64, 70, 71] 11 (37%) Outcomes are identified as being more relevant to patients [46,50,51,54,63,64,66,[69][70][71][72] 11 (33%) Patients' input offers directions for researchers and research funding agenciesgeneration of new ideas [24,45,48,49,51,52,57,61,65,67,68] 9 (30%) Research outputs are more accessible to the public [24,45,47,51,52,56,57,64,69] 6 (20%) Research priorities ranked by patients reflect applicability to the lived experience of illness, frailty, and/or treatment [24,48,49,52,58,61] 2 (7%) Democratization of allocation of research resources [49,52] 1 (3%) Increased transparency and accountability for publicly-funded research [55] wellbeing, but it should not serve to prevent initial or ongoing engagement…”

Section: Discussionmentioning

confidence: 99%

“…The emphasis on how research partnership can and should be achieved is crucial in addressing the reservations that teams have in engaging frail and/or seriously ill patients beyond the level of consultation only. Both patients and researchers should work to ensure clarity in patients' roles and their expected contribution throughout the study so that their input is not perceived as tokenistic [45,46,57]. Unintended symbolic or inauthentic gestures with frail and/or seriously ill patients assumes a greater level of magnitude, particularly when quality of life is already compromised or life-span may be limited.…”

Section: Discussionmentioning

confidence: 99%

“…The number of patients in the studies ranged from one [64] to 168 [68] with a median of 16 patients. There were 11 (37%) studies where patients were engaged as a group with caregivers and/or other stakeholders (e.g., ex-patients, survivors, patient representatives/ advocates, or members of the public) [7,24,46,52,53,[57][58][59][60][61]72].…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…Other studies included patients/persons with dementia (n = 6), older adults with frailty (n = 3), and palliative patients including malignant and non-malignant disease (n = 3). Patient characteristics of frailty and/or serious illness were [46,53,54,57,63]; three (3/ 5) of which reported ethnicity more broadly in terms of "diversity" [46,53,63].…”

Section: Characteristics Of Patients In Included Studiesmentioning

confidence: 99%

“…Four (13%) studies included frail and/or seriously ill patient partners from research collaboratives or networks who assisted with the identification of appropriate patient engagement strategies specific to frail and/or seriously ill populations at a broader system level. Patients described contributing to grant writing, proposal development, tool refinement, conducting interviews, representing research findings, and co-authorship on papers across different studies [24,46,55,56].…”

Section: Patient Partner Research Roles: Research Stages and Activitiesmentioning

confidence: 99%

See 4 more Smart Citations

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

et al. 2020

View full text Add to dashboard Cite

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).

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

Section: Characteristics Of Patients In Included Studiesmentioning

confidence: 99%

Section: Patient Partner Research Roles: Research Stages and Activitiesmentioning

confidence: 99%

See 3 more Smart Citations

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

et al. 2020

View full text Add to dashboard Cite

show abstract

Long‐term consumer involvement in cancer research: Working towards partnership

Milley

Chima

McIntosh

et al. 2021

Health Expectations

View full text Add to dashboard Cite

Background Meaningful consumer involvement in health research is important. There are limited data on how to maintain long‐term consumer involvement. Objective To identify barriers and facilitators to meaningful long‐term consumer involvement in research. Design Six semi‐structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia's National Framework for Consumer Involvement in Cancer Control. Results Equality, respect and feeling valued were facilitators to long‐term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus. Conclusion Research networks should reflect on several factors to maintain long‐term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on‐going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.

show abstract

The Patients Changing Things Together (PATCHATT) ethics pack: A tool to support inclusive ethical decision-making in the development of a community-based palliative care intervention

Roberts

2022

Clinical Ethics

View full text Add to dashboard Cite

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice.

show abstract

Consumer involvement in cancer research: example from a Cancer Network

Cited by 6 publications

References 7 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

Long‐term consumer involvement in cancer research: Working towards partnership

The Patients Changing Things Together (PATCHATT) ethics pack: A tool to support inclusive ethical decision-making in the development of a community-based palliative care intervention

Contact Info

Product

Resources

About