A five-year partnership between South Australian consumers and researchers is showing how sharing research can generate new knowledge, greater understanding and better health.
The co-research partnership formalised in 2013 between South Australia’s peak consumer and health research organisations has yielded positive developments in areas as diverse as breastfeeding pre-term infants and preventing stillbirth. [See the accompanying boxes]
The vision of Health Consumers Alliance of South Australia (HCA) is consumers at the centre of health policy, services and research. It seeks to bring health professionals together with consumers to achieve quality, safe, consumer-centred care.
The vision of the South Australian Health and Medical Research Institute (SAHMRI) is to transform research into health.
Together the two organisations in 2013 agreed to a shared commitment to:
- Develop health and medical research that reflects the needs of the community and strategies to ensure health care consumers and the community can effectively engage in the work of SAHMRI
- Ensure SAHMRI’s research is relevant and accessible to the community, especially those who are users of health and medical care and services
- Provide a framework to guide activities jointly undertaken by the parties.
The partnership sought evidence to generate a framework for consumer engagement[1]. The process included a literature review on effective strategies for consumer engagement in health and medical research[2]; interviews with individuals experienced in leading consumer engagement and lead medical researchers; group discussions; and a consensus workshop. The framework and report[3] continue to shape and inform the work undertaken by the partnership.
The Best-Fed project has involved consumers initially in setting joint priorities for the research questions to be answered. The work is focusing on how to increase the amount of mother’s milk that preterm babies receive. Parents of preterm infants are making a huge contribution to ensuring that neonatal units in Australia and New Zealand adopt practices that help mothers to breastfeed their preterm babies or increase the amount of human milk available, including through milk banks.
The framework[4]
The framework has four organisational domains: leadership and culture, capacity building, governance and infrastructure, with key components identified for each. The organisational domains are encircled by the goals of the International Association for Public Participation Spectrum of participation: inform, consult, involve, collaborate and empower.
Principles and priorities
The report identified principles to support consumer and community engagement, so health and medical research:
- Is based on the understanding that those affected by research have a right to be involved in research
- Can and should, where possible, occur across all stages and phases of research
- Is based on partnerships between consumers, the community and researchers to determine research priorities
- Includes the promise that consumer and community contributions will influence research
- Is sustainable by recognising and communicating the needs and interests of all stakeholders
- Actively facilitates involvement, practically supports participation and seeks input from research participants in designing how they participate
- Communicates to participants how their input influences research
- Provides opportunities for consumers, communities and community organisations to develop their capacity, abilities and skills.
A Consumer and Community Engagement Committee, chaired by HCA comprises researchers representing each SAHMRI research theme[5], and an equivalent number of consumers appointed via a merit selection process. The role of the Committee is ‘to provide and use independent, evidence-informed advice regarding co-design and co-research in order to maximise consumer and community engagement and benefit.
The Committee:
- Has an institute-wide scope, encompassing SAHMRI’s research themes, policies, projects and programs
- Focusses on mutually agreed priorities, identified, enacted, monitored and evaluated as outlined in the Implementation Plan
- Uses, promotes and supports evaluation and further development of the Consumer and Community Engagement Framework
- Uses health literacy principles in communications.’
The committee has focussed initially on four of the 17 agreed priorities and made some progress in meeting goals including: establishing a register of consumers interested in participating in health and medical research and capacity building such as training for researchers to undertake consumer and community engagement
The Committee has also undertaken unexpected additional work, most significantly in partnership with the author team for the Cochrane update review: Nilsen et al 2009 ‘Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. The Committee has informed a co-research approach to updating the protocol and to undertaking the review.
Stillbirth is a devastating, but often lonely, tragedy for parents and families. Healthy Mothers, Babies and Children is part of the Stillbirth Centre of Research Excellence. Parent involvement is central to the success. Parents work alongside researchers and health professionals to find ways to prevent stillbirth, increase understanding of the causes of stillbirth and to develop guidelines for best practice — extensive guidance on bereavement care has just been co-developed.
What have we learned?
The Consumers Health Forum and the National Health and Medical Research Council have released (2016) a ‘Statement on consumer and community involvement in health and medical research’[6]. The experiences and learning of the five-year SAHMRI-HCA partnership reflect and support the Statement.
Consumers and communities are meant to be the beneficiaries of the research they fund (via taxes and philanthropy) and in which they often participate.
Co-research is not about consumers being asked to write a letter of support to potential funders after a research project has been developed. Nor is it simply a means to increase participation in clinical trials or to check consent forms are in plain language. Co-research is a whole-of-research-cycle process that can enhance the relevance, success and sustainability of research by engaging consumers at all stages and phases of the research process.
If researchers work in isolation from consumers and communities those researchers will ask questions, and undertake research, in ways that interest and suit them; they may even restrict publication of research findings to journals that consumers cannot access.
When researchers and consumers work together, they can identify and refine good research questions that matter to the community, and in particular the people the research is designed to help. Together they can design and conduct research that engages the community (including increased participation in clinical trials) and ensure the new knowledge generated is relevant, understood, shared and promoted by and for the people it is meant to benefit.
[1] Miller et al. Health Research Policy and Systems (2017) 15:9 DOI 10.1186/s12961-017-1071-2
[2] Johnson A What strategies for consumer engagement in health and medical research have been effective for consumers and researchers? (2013) Unpublished. www.sahmri.org and www.hcasa.asn.au
[3] Health Consumers Alliance of South Australia, A consumer and community engagement framework for the South Australian Health and Medical Research Institute(2014) Unpublished www.sahmri.org and www.hcasa.asn.au
[4] Miller et al ibid
[5] https://www.sahmriresearch.org/our-research
