Optimising community involvement in COVID-19 research

THE COVID-19 pandemic has generated intense research, alongside major and rapid health care transformation. Research is rapidly evolving with over 3000 international COVID-19 clinical trials. Time from research grant calls to submission has been as short as one week. Health services transformation has been unprecedented, rapidly transitioning to telehealth and virtual care and changing care provision and environments to optimise the safety of staff and patients.

Rapid transformation risks leaving the most important stakeholders, our community, out of vital research and health care improvement initiatives.

Partnering with the community and public is a research and health care improvement imperative. It is termed “consumer and community involvement” (CCI) in Australia and “patient and public involvement” in the UK.

CCI is a policy and practice standard that recognises that the community is the funder and beneficiary of health care and research, deserving integration and partnership to ensure optimal, evidence-based and tailored health care that meets community needs and priorities. The National Health and Medical Research Council (NHMRC) and the Medical Research Future Fund (MRFF) highlight the importance of CCI across the research cycle. The Australian Commission on Safety and Quality in Health Care also has a standard on partnering with consumers      in the planning, design, delivery, measurement and evaluation of care.

CCI is a priority area for Monash Partners —one of Australia’s largest accredited Academic Health Science Centres (AHSC), with 12 independent health services, health research and education providers, reaching over 3 million Australians. Monash Partners’ purpose is to “connect researchers, clinicians and community to innovate for better health”. With vital funding from the MRFF, we have worked with other AHSCs nationally through the Australian Health Research Alliance to undertake research, identify best practice, engage internationally and develop strategies to prioritise and facilitate CCI to improve health care and outcomes for Australians.

To facilitate CCI, Monash Partners launched a CCI initiative during the COVID-19 pandemic, including a dedicated Consumer Advisory Committee, to facilitate and enable CCI in an easy, timely and supportive manner. We recruited 10 consumer and community members through health services, consumer organisations and research networks. This included males and females, some with chronic health conditions, such as cancer, Parkinson’s disease, and diabetes, and others with caregiver experiences, from diverse cultural backgrounds and ages. We developed a shared vision, co-developed terms of reference and provided training in giving feedback on project goals, processes, activities and outcomes. Examples of contributions included:

▪ Identification of COVID-19 priorities for research and health care improvement including learning more about COVID-19, identifying and maintaining COVID-19 best practices for health care and public health, evaluating telehealth, examining community impacts of COVID-19 restrictions and programs to help people cope, evaluating community health literacy on COVID-19 and end-of-life and advanced care planning for people with COVID-19.

▪ Monash Partners COVID-19 community survey through think-aloud interviews to review objectives, and revise and suggest new survey questions. The committee highlighted equity and access, primary care, advanced care planning, and mental health support. Overall, 1200 community members in Victoria completed the survey and the results have guided research, health care and policy initiatives including advocacy for ongoing telehealth, and expanded mental health support.

▪ COVID-19 project inputs submitted to funding schemes by researchers and health professionals across multiple health services and research teams. Feedback by consumers included framing of project aims, project outcomes, and strategies for recruitment.

▪ Telehealth — input into surveys and the formation of a project consumer advisory committee on telehealth screening for maternity care.

We launched the Monash Partners CCI platform with resources and online CCI training modules, which are freely available. We also provided significant CCI support to health professionals and researchers with Ayton and Carmody co-facilitating consumer workshops with health professionals and/or researchers. We co-developed tip sheets on how to engage with consumers online, and guidance and processes on consumer sitting fees. Narrated PowerPoint presentations were used to train health professionals and researchers on the how and why of CCI.

When a system is in crisis, best practice principles can be forgotten. CCI is best practice in research and health care improvement. To facilitate rapid responsive input, Monash Partners built on extensive research and consultation to launch our resources and training programs and to establish the CCI committee during the COVID-19 pandemic. Co-facilitated workshops modelled good practice and Monash Partners systems and resources made engagement simple. Overall, the Monash Partners CCI platform including the CCI committee, facilitated workshops, an online portal, resources and training, had direct and active uptake by researchers, clinicians and services, having a tangible impact on research design, health care practice and informing policy.

Darshini Ayton is a Consumer and Community Involvement Fellow at Monash Partners Academic Health Science Centre and Senior Research Fellow and Lecturer at the School of Public Health and Preventive Medicine, Monash University. Twitter @darsh_ayton

Sarah Carmody is the Consumer and Community Involvement Project Manager at Monash Partners Academic Health Science Centre.

Angela Jones is the Chief Operating Officer at Monash Partners Academic Health Science Centre. Twitter @MonashPartners.

Helena Teede is the Executive Director of Monash Partners Academic Health Science Centre, Director of Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine Monash University. Twitter @HelenaTeede.

Wasana Liyanage, Coral Keren, Ken Young, Mariam Mousa, Madeleine Gardam, Lisa-Jane Oldfield and Anna Steiner are members of the Monash Partners COVID-19 Consumer Advisory Committee.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.