A Manifesto
At it's most basic level, medical research and clinical trials give people hope. Hope that something will change. Hope they might feel better. Hope they might get longer with their loved ones, longer doing the things they love. Hope that no-one in the future will have to go through what they or someone they care about is or has.
It's a basic right to have access to information about research, to the opportunity to take part in research, to the chance to help shape research priorities, research design and conduct, how research is shared and how the knowledge is put into practice.
CCReW members are as invested as other stakeholders (like industry, researchers, clinicians, funders and government) in getting fast, relevant, beneficial outcomes from research. In fact, they may just have more to gain.
The CCReW need support to participate in research and partner effectively with other parts of the research ecosystem.
Vision
A healthcare system where everyone has the same awareness, rights, opportunity and access to participate in and contribute to medical research and clinical trials, and are recognised, respected and supported for that effort.
Aims of this initiative
At it's heart, the CCReW initiative aims to directly support and advocate for people participating in and contributing to research:
- To help people find and access medical research and clinical trials.
- To help people navigate their questions and issues taking part in clinical trials, and advocate to help improve their experiences,
- To share opportunities for people to contribute their lived health experience and expertise to research, and make it easier for diverse groups to do so.
- To make it easier for the research sector to connect with, involve and learn from people with specific health experiences
- To ensure CCReW representation in decision-making about the research ecosystem.
There are 3 core elements, with layers within each:
1. CCReW Support
2. CCReW Experiences, Connections, Opportunities
3. CCReW Believers making possible the previous 2 elements through their philanthropy, engagement of services, and sharing of resources.
What might success look like?
- People are aware of their right to research and supported to participate and get involved in it when interested.
- Participating in research is an exceptional healthcare experience, accessible to everyone, no matter their clinician, age, location, gender, language, ethicnity, culture or social background.
- Research is more relevant to those it aims to serve.
- Research studies are recruited to plan and completed quickly, thereby reducing research waste and using limited resources more effectively.
Why is AccessCR doing this?
AccessCR has been engaged in helping demystify clinical trials for the public and improve the efficiency of clinical trials (recruitment and conduct) since 2007. In 2017, AccessCR launched Research4Me to facilitate greater connection between the community and researchers and consumer involvement in clinical trials. Research4Me was put on hold just as COVID hit.
Throughout the pandemic AccessCR reflected on the issues raised by health consumers that didn't seem to have a natural home with any one organisation. Challenges identified included finding and accessing trials, dealing with questions and issues that arose whilst participating in a trial, finding ways to contribute lived experience to research, getting access to scientific literature and conferences, and more.
There was no one place people could call for help. Advocacy efforts were disjointed and didn't find momentum. And unlike other stakeholder groups such as clinicians, researchers, industry, research networks, state and commonweatlh government agencies, this stakeholder group had no umbrella organisation representing their specific interests and experiences in research. Largely, health consumers have been left to navigate participation and involvement in research alone.
AccessCR's founder has invested significant time over the years to understanding and advocating for the issues of health consumers in research. The decision to launch the CCReW initiative formalises the social good we want to create - recognition, a voice and support to CCReW. Though AccessCR is starting this initiative, we are actively seeking like-minded individuals and organisations to help us turn it into a sustainable charitable organisation, creating all the benefits a strong CCReW will reap for the community, health, and the research sector.