A few years ago, I coined the term "Consumer Research Workforce". It happened while I was advocating at an MRFF Priority Setting consultation session for the need to invest in, support and develop the underresourced pool of health consumers increasingly involved in research.
Over the years I have extended that term to include not just those involved in research, but also those seeking and taking part in clinical trials (or caring for those that are), in recognition of the considerable effort of both these groups, outside of their normal day-today responsibilities. I've continued to use this term informally to help shift mindset around this group, their role in medical/clinical research and therapeutic development, and the support they need to do the "jobs" that research sponsors and funders are increasingly requiring of research participants and consumer research partners respectively.
With International Clinical Trials Day (20 May) just around the corner, I've decided it is time to formalise this advocacy. Today I launch the Community and Consumer Research Workforce (the CCReW) initiative as the latest AccessCR initiative to give recognition, practical support and a voice to the people seeking, participating and partnering in research.
The label of patient, carer, volunteer, participant, advocate, etc, often creates a power imbalance, and de-values the broader life circumstances, skills and knowledge someone has to offer. I've experienced this personally, with much frustration.
The label CCReW instead aims to empower research participants and consumer partners in research, to recognise their considerable effect, to give them confidence in their contributions, and elevate their voice alongside those of other research stakeholders. Without the CCReW, there would be no clinical trials. The CCReW are just as committed to improving the lives of future patients as any other stakeholder group in the research ecosystem. They may even put their lives on the line, or on hold, to help.
The CCReW initiative is about redefining the perception/value of CCReW within the research ecosystem, and making sure that the diverse voices within this stakeholder group get the help, resources, development and opportunity they need to make a difference, for themselves, and for others.
While there are many organisations that recruit and involve the CCReW, there is no one umbrella organisation the CCReW can contact for assistance, to voice to their experiences and issues, and be connected in to research-related opportunities. Every other part of the research ecosystem has a representative/support group (for instance Medicines Australia, MTAA, AusBiotech, ACTA, SCRS, R&D Taskforce, the Clinical Trials Project Reference Group, AAMRI, Research Australia, AHRA, etc), yet research-engaged consumers do not have their own. It is time this changed. I am calling for your help to make this change.
By helping identify barriers, advocate solutions, and providing an indepedent resource to the consumers participating and involved in research, the CCReW initiative aims to help other organisations advocate for and better support their often underresourced consumer partners and research participants. As such, I hope it will be seen as a facilitator, not a competitor, to the work of others.
I have been socialising this idea with my inner circles for the past 6 months and am now throwing the idea out into the universe to see what comes back. I personally hope the concept resonates and builds momentum such that the idea matures into the sustainable grassroots support and advocacy charitable organisation I envision.
If you are someone who identifies as part of the CCReW (ie. a "CCReW member") or want to help financially support the CCReW (ie. a "CCReW Believer"), please reach out for a discussion around what you need and what we can achieve together.
The first CCReW support activity will launch in the next couple of days. It is a fortnightly CCReW newsletter sharing information about newly recruiting trials, events and involvement opportunites. More CCReW initiatives will be unveiled gradually through that newsletter and a range of my social channels. At all times, I welcome your ideas, suggestions, constructive feedback to ensure we better meet CCReW needs.
So what do you think... Is this a useful or crazy concept, or both? And are you a CCReW Member or CCReW Believer or both?