Workshop summary – review of the Statement on Consumer and Community Involvement in Health and Medical Research (2016)

On this page:

• Workshop feedback
• Format of the workshop
  • Speakers
  • Attendance
  • Interactive questions
• Key takeaways
• Background
• Presentations

Workshop feedback

At the online workshop, participants were asked to contribute to the discussion by completing the Consumer Statement Workshop feedback form. Those who could not attend are also invited to fill in the feedback form, which will remain open for feedback until 3 February 2023.

The workshop was the first step in the review consultation process. There will be other opportunities to contribute to the discussion in the future.

Format of the workshop

The workshop was chaired by Ms Ainslie Cahill AO, Chair of NHMRC's Consumer and Community Advisory Group. It integrated several interactive questions with presentations from speakers and encouraged participants to use the chat function. Presentations were delivered by several consumers, consumer advocates and researchers and are available in the Downloads section, below.

Speakers

Dr Jack Nunn – Director, Science for All

Dr Jack Nunn is the founder and Director of the charity 'Science for All', working to involve people in doing research by building partnerships between the public and researchers. He is also the Public Involvement Strategic Lead for La Trobe University, a member of the Australian Government committee MSAC-ESC, Co-Chair of the UNESCO Citizen Science & Open Science Community of Practice and a member of the Cochrane Council. Recent projects include leading the co-design of Standardised Data on Initiatives (STARDIT).

Anne McKenzie AM – Community Engagement Consultant and Advisor

Anne McKenzie AM has held professional and voluntary roles as a consumer advocate for almost three decades. Since 2004 she has worked in research organisations in Western Australia to increase community involvement in research. In 2015 Anne was appointed to the Order of Australia for her advocacy work in health services and research, and she received the NHMRC's 2021 Biennial Award for Consumer Engagement.

Dr Janelle Bowden – Founder, AccessCR

Dr Janelle Bowden has 20+ years of experience working in and around clinical trial operations in Australia and overseas, for sponsors, sites, and as a consultant. Janelle has a passion for creating more inclusive, accessible trials, and supporting greater consumer participation and involvement in research. Janelle is founder of AccessCR, a social enterprise that provides clinical trial and consumer engagement services to the research sector (sites, sponsors, other organisations) so as to deliver on its mission to support, build capacity in, connect and advocate for the needs of the community and consumer research workforce (CCReW – people looking for, taking part in and involved in medical research and clinical trials).

Professor Susan Ramus – School of Clinical Medicine, UNSW

Professor Susan Ramus is an international ovarian cancer researcher, in the School of Clinical Medicine, UNSW Sydney. Her interests include genetics to improve risk prediction for ovarian cancer and tumour profiling to improve ovarian cancer prognosis. She established and co-leads the international Ovarian Tumour Tissue Analysis (OTTA) consortium and she is a member of the steering committee of the Ovarian Cancer Association Consortium (OCAC).

Debra Langridge – Head, Consumer and Community Involvement Program, West Australian Health Translation Network

Debra Langridge is passionate about ensuring research can impact policy, practice and wellbeing of communities and enjoys bringing people together to make a difference. Her role leading the CCIProgram is to connect researchers with people with lived experience to support and encourage best practice research. Deb has always worked to capture the voices of all parts of community including access and inclusion, Aboriginal and Torres Strait Islander people, culturally and linguistically diverse communities, children and young people, mental health, health and community services.

Attendance

Over the 3-hour session, 193 participants from all over Australia, spanning consumers and consumer advocates, researchers, research institutions and government representatives, were counted as being online.

Interactive questions

Four interactive questions were asked throughout the workshop:

1. Question 1: What is your role in consumer and community engagement?
   The following bar chart visually represents the data collected (81 responses).

   

2. Question 2: What is your level of familiarity with the Statement on Consumer and Community Engagement in Health and Medical Research (2016)?
   The following scatter chart visually represents the data from 121 responses from participants.

   

3. Question 3: What do you see as the major enablers or facilitators of consumer and community involvement in health and medical research?
   The following word cloud displays 93 responses from participants.

   

4. Question 4: What do you see as the major barriers or challenges for consumer and community involvement in health and medical research?
   The following word cloud displays 85 responses from participants.

   

Key takeaways

The key themes emerging from verbal commentary during the discussion part of the workshop and the MS Teams chat are outlined below, followed by verbatim excerpts from the chat export.

Many consumers do not feel heard by the health and medical research sector. While some institutions and organisations engage meaningfully and effectively with consumers and the community, there is a perception that many organisations treat community involvement as a 'check box' activity and undertake minimal activities

Less about 'oh did we remember to invite a consumer' and more about 'what knowledge and which skills do we need in this room, who is this for, and who are we excluding if we go ahead with this team'.

Consumers want to be involved in all aspects of health and medical research at all stages, from co-designing funding calls to scoring grant applications.

As a consumer it seems to me that the most important time to have consumers involved is the design stage. And on committees assessing projects and granting funding.

Roles and responsibilities must be considered for funders as well as researchers and research institutions. Suggestions included dedicated funding (and remuneration) for consumer and community involvement and adding reporting requirements to grants.

Researchers need to be encouraged to make a conscious decision to cost for involvement but that must come at the expense of another component of the project. That requires funders to really, truly value consumer involvement in research as part of the project's overall value.

Implementation of the principles of consumer and community involvement was a key theme during the workshop, including:

• the need for consistent, transparent implementation guidance and resources like training modules and case studies showing examples of success stories and where certain strategies may not have worked
• support for priority communities to ensure their voices are heard.

I think consumer statement needs to be more clearly integrated into the national statement on ethical conduct – how do the documents together give guidance to researchers on how to do good quality research, and HRECs on how to assess.

Participants noted they would like to be further involved in the Review of the Statement process, although requested longer lead times as consultation on the review progresses and more detail included in advertising for events. Several also noted they could facilitate wider reach by using their own networks to collect feedback on any consultation material or drafts.

You could tap into more broad expertise by tasking us with reaching outside this group with the draft revised statement – we could help gather views of people for whom these sorts of consultations don't work.

Agreed. Lots of consumers here willing to help, and support the consultation beyond the session – useful to mobilize people passionate about consumer engagement and connect in with their networks. I believe the consultation is ongoing.

Background

The Statement requires revision and restructure to align with current practices.

Many organisations are now publishing their own resource materials to support consumer and community involvement in research. To support this, NHMRC and CHF intend to reframe the Statement with a shorter, sharper focus on:

• principles
• the responsibilities of researchers and institutions
• the role and expectations of consumers.

Review of implementation resources for consumer and community involvement is not in scope for this project. There may be an opportunity to update implementation resources and toolkits in the future, but this will not occur until the review of the Statement itself has concluded.