We live at an extraordinary time in human history. More than in any earlier era, Australians can expect to live long and healthy lives. Our life expectancy is one of the highest in the world and children born today can expect to live into their 80s.
There are many reasons for this good news – clean water, food and air; immunisation against infectious diseases; reduced tobacco smoking; antibiotics; blood pressure control; cancer screening programs; high quality health care, and more. Today we even have a vaccine against cancer, the human papilloma virus vaccine that protects against cervical cancer. All of these factors are the outcome of research.
At the same time, there are unsolved problems – diseases like dementia, diabetes and many cancers for which we still lack effective prevention or treatment, and increasing disease complexity as we live longer. The answers to these problems will also come from research.
Research uncovers the causes of disease. It discovers how to prevent it, detect it early, and treat it. Research can also show us how to translate this knowledge into action through effective public health policies and clinical practice.
As a society, we increasingly recognise the central position of the community in this process – that we are all health consumers who have a vested interest in each step along the pathway from identifying to solving health problems. Health and medical research is most effective when it is a partnership between researchers and the community.
As the Australian Government’s lead agency for health and medical research, the National Health and Medical Research Council (NHMRC) is focused on the improvement of human health through research. It does this by funding excellent research and researchers across a broad spectrum of health needs, and by producing evidence-based health guidelines and information statements to promote the translation of knowledge into action. NHMRC also develops codes for the ethical conduct of research and ethical guidelines on complex issues (such as assisted reproductive technology and animal-to-human transplantation). The community and consumers are directly involved in many aspects of this work.
While the topics covered are sometimes controversial and opinions on them differ, community input through these consultations broadens our perspectives and helps to ensure these important public documents are relevant, clear and address community concerns.
First, NHMRC seeks advice from the community and consumers. For example, the Council of NHMRC (its top advisory body) and a number of NHMRC committees and advisory groups (including the new Mental Health Research Advisory Committee) include consumer representatives who provide a consumer perspective on NHMRC’s decisions and policies as they are developed. Our Community and Consumer Advisory Group, a committee of outstanding consumer and community leaders, meets several times a year specifically to advise me on issues relevant to the Australian community and consumers of health care and medical research.
NHMRC’s health guidelines, information statements, ethical guidelines and other policy documents also undergo public consultation, or targeted consultation with specific stakeholders, before they are finalised and published. While the topics covered are sometimes controversial and opinions on them differ, community input through these consultations broadens our perspectives and helps to ensure these important public documents are relevant, clear and address community concerns.
Second, NHMRC involves the community and consumers in our work to support research itself. Each year NHMRC receives well over 5,000 grant applications which are then reviewed and ranked for scientific significance, quality and other criteria by panels of independent experts. In 2017, 85 specialist grant review panels over 11 NHMRC grant schemes included a Community and Consumer Observer who provided independent advice on our processes to ensure they are fair and transparent. Some panels, such as recent grant review panels for the NHMRC National Institute for Dementia Research, also include people living with dementia, either affected directly or as carers, who help in the assessment of grant proposals.
In a new initiative from 2016, we have also created an on-line portal through which community and professional groups can propose topics to be considered for special funding through a Targeted Call for Research.
Increasingly research institutions are also engaging with the wider community in developing their research strategies and communicating the outcomes and implications of their research.
Many NHMRC-funded research projects directly involve patients and other community members in project design and monitoring, and/or as participants in the research itself, such as clinical trials and population health studies. Increasingly research institutions are also engaging with the wider community in developing their research strategies and communicating the outcomes and implications of their research.
As well as drawing on community advice through our funding processes, we are keen to ensure that NHMRC-funded research leads as directly as possible to better community health.
One way we foster this process is by funding partnerships: researchers and health policy makers or service providers work together to define research questions, undertake the research and implement the findings into policy and practice. In fact, CHF is a lead participant in one of these partnerships, the NHMRC Partnership Centre for Health System Sustainability, funded in 2017. Another is by recognising outstanding collaborative centres which are led by the health system and excel in research and the translation of evidence into patient care. These are the NHMRC Advanced Health Research and Translation Centres (of which there are now seven, based in Adelaide, Brisbane, Melbourne, Perth and Sydney) and NHMRC Centres for Innovation in Regional Health (of which there are two, based in central Australia and the Hunter Valley, focusing on the particular needs of their regional and remote communities).
I have outlined some of the ways that NHMRC involves the community, consumers and patients in our work to fund research and to foster its translation into better health. Could we do better? Of course! Government agencies like ours, research institutions, researchers and consumers are still learning how to work together most effectively in setting national research priorities, designing and undertaking research, and implementing the outcomes into health policy and practice.
Fortunately most researchers love to talk about their work and many people in the wider community are interested to know what researchers are doing, especially in health and medicine.
There are barriers. One is the broad diversity of research we support: for example, forms of consumer or patient involvement that work well for clinical research may not transfer easily to laboratory-based discovery research. Another is the technical complexity of contemporary biomedicine: this can be a barrier to shared understanding, whether by consumers or researchers from other fields. Yet another is the fact that the outcomes of basic research can be difficult to predict: work that appears a long way from community needs might lead to a transformative discovery. It is crucial that we support the best of this exploratory research as well as research that is easier to explain or justify, such as a clinical trial.
Communication is one of the ways to break down these barriers. Fortunately most researchers love to talk about their work and many people in the wider community are interested to know what researchers are doing, especially in health and medicine. Websites and social media make it easier to exchange information than ever before and, like others, we are using these media to post stories and videos on NHMRC-funded research. These stories are also a way to talk about the realities of research, especially the long and difficult road from a discovery to patient benefit, so that we share the excitement of progress without raising false hopes.
Research is the pathway to better health and health care. We will all benefit from strengthening the dialogue between the community and the research sector as we work together to solve our present and future health challenges. NHMRC greatly values its relationship with CHF and appreciates your help in building our partnership with consumers.
Photo by Mitch Rosen on Unsplash
