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

Abstract

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.

Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery‐Based Medical Research Institute

“…The experience of feeling undervalued influenced some consumers' decisions to leave the programme and was cited as a source of disappointment or frustration for those seeking deeper collaborations or co‐design experiences. These findings highlight the importance of acknowledging the significant impact that consumer involvement can have for individuals 3 . The need to continuously foster genuine engagement and address tokenism are essential elements of any programme that require ‘space to talk’ and ‘space to change’ 38 to enable the research co‐production process.…”

“…These findings highlight the importance of acknowledging the significant impact that consumer involvement can have for individuals. 3 The need to continuously foster genuine engagement and address tokenism are essential elements of any programme that require 'space to talk' and 'space to change' 38 to enable the research co-production process.…”

“…These findings add weight to the existing literature describing 'engagement support' and facilitation as essential elements in preclinical programmes. 3,14,19 The COVID-19 pandemic undoubtably impacted the programme.…”

“…8,9 To date, there is a lack of detailed evaluation of the experience of consumers and researchers in the preclinical research setting, with scant reporting on formal comprehensive programmes operating across entire organisations. 3,[8][9][10][11][12][13][14] This study uniquely focuses on evaluating an established consumer involvement programme available across a leading, Discovery-Based Medical Research Institute (DBMRI) in Australia (Box 1). The programme under study was one of the first dedicated, resourced consumer-involvement programmes to commence at a DBMRI in Australia.…”

‘Share your views’—international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer

“…Of interest, this survey was also completed by people who had not previously engaged with MASCC, suggesting the existence of a consumer population that would like to engage with Societies like MASCC but has not yet done so. This may have been impacted by the range of barriers consistently identified to limit engagement, including cost, complexities of travel requirements, and availability [ 22 – 24 ]. Appropriate recognition, particularly in a post-pandemic world, of these barriers is critical to promote strong consumer representation at annual meetings.…”