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

Meaningful consumer involvement in research is vital, however data on how to maintain long‐term consumer involvement is currently limited. In this study, Kristi Milley, PC4’s National Manager aimed to identify barriers and facilitators to meaningful long‐term consumer involvement in research. Semi‐structured interviews were conducted with members of PC4’s Community Advisory Group and included the review of 40 supporting documents. Themes from the interviews and documents were mapped onto the domains of Cancer Australia’s National Framework for Consumer Involvement in Cancer Control. Equality, respect and feeling valued were facilitators to long‐term involvement which fed into the overarching theme of organisational commitment. Barriers to involvement included difficulty creating balance, managing competing deadlines and integrating a consumer role with a personal life. These themes aligned strongly to the framework domains of committed organisations, capable consumers, inclusive groups and shared focus. In order to maintain long‐term consumer involvement, research networks must build a meaningful relationship that reinforces the value and scope of a consumers contributions. 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.

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