In the week that this edition of Health Voices comes out, I am pleased to say the Federal Budget has given financial support to the increasing involvement of consumers in direction of medical research.
The Budget earmarks $150.4 million over four years from the Medical Research Future Fund to support translation of research into better patient care. It means consumers will play a part in turning research into real health benefits, identifying evidence-based and best practice care.
Already consumers are being drawn into a more active role in their own health care.
“Your lounge room will be your personal doctor’s waiting-room.” Those words from Ian Frazer, whose research was key to a massive public health advance, the vaccine preventing cervical cancer.
Professor Frazer points to biomedical advances already with us, such as the predictive power of genomics and telemedicine aided by artificial intelligence. All of these may enable us to monitor our own health and receive the right treatment without leaving home.
The power of modern medical research poses a paradox: while the science itself becomes ever more complex and sophisticated, the result can enable consumers individually and together to influence more directly their treatment and health outcomes.
Bringing more precise treatments into the hands of patients, is also drawing individuals into a more intimate relationship with health and medical research.
As Ian Frazer says: Your unique genome, and your health history, will combine with your real time data on lifestyle to create a personal private data profile that by comparison with de-identified public data collections, will give information about your current health status, and about how to avoid future health risks.
The Medical Research Future Fund Advisory Board, which Professor Frazer chairs, wishes to consult with you the consumer, to understand how consumers think the planned health and medical research investment can best contribute to your future health.
To take advantage of the health revolution, he says “you’ll be giving up a little about yourself, de-identified information in a secure data pool shared to promote your own awareness, with an option to contribute to research and broader population health knowledge”.
CHF advocates for a significant role for consumers in research and as you will read here, there are a range of research projects in Australia in which consumers play an influential part.
Anne Kelso takes up the theme of health research being most effective when it is a partnership between researchers and the community. As CEO of the National Health and Medical Research Council, Professor Kelso, says that while research topics covered are “sometimes controversial and opinions on them differ, community input through consultations broadens our perspectives and helps to ensure these important public documents are relevant, clear and address community concerns.
As a society, she says, 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 from identifying to solving health problems.
Karen Carey, who chairs the NHMRC’s Community and Consumer Advisory Group says the group has sought to encourage the research sector to see the community and consumers as valuable partners in research, far beyond the traditional ‘trial participant’ role. Most recently the CCAG have been exploring those issues that the community believe should guide research to deliver value for our investment. “In the past we have tended to limit consumer and community involvement in research to funding and trial participation, but this narrow view is being challenged worldwide and many good organisations are proving that there is significant value in having consumers involved in all levels of research including the policy and planning phases.”
Anne McKenzie writes there remains a lack of comprehensive requirement for consumer and community involvement in research, along with an absence of recognition for their true value. But there have been some “massive changes” with regards to attitudes towards meaningful involvement, with best practice activities in Australian research in areas such as cancer, kidney health, HIV/AIDS, cystic fibrosis, diabetes, dementia, rare diseases, mental health, disability, Fetal Alcohol Spectrum Disorder (FASD) and big data research.
That all makes sense when you consider, as Jeffrey Braithwaite says: “The patient is the only stakeholder who experiences the whole journey.” For instance, learning how patients with lifelong conditions are affected in ways other than the physical can lead to improved wellbeing for the patient.
Jonathan Karnon says while researchers are best placed to judge the quality of most research proposals, informed consumer and community representatives may be better placed to judge the relative importance and value for money of alternative high-quality research proposals.
But Julian Elliott, Tari Turner, Anneliese Synnot point out that while there are still many important, unanswered health questions where more research is needed, increasingly it’s not a lack of information we are struggling with, but an overwhelming wave of information: a data deluge.
The link between consumer involvement, health outcomes and research is exemplified by two projects involving Research Australia members in juvenile diabetes and child cancer. Nadia Levin says as we move into a world of patient centred care and precision medicine, blurring the borders between research and health care delivery, the role of the consumer must, and will, continue to evolve in keeping with contemporary society.
The Lowitja Institute, Australia’s national institute for Aboriginal and Torres Strait Islander health research, funds 40 research projects. Lelia Smith writes: “We are working for the health and wellbeing of Australia’s First Peoples through research, knowledge translation, and by supporting Aboriginal and Torres Strait Islander health researchers… Knowledge translation is key to this goal.”
The vision of the Health Consumers Alliance of South Australia is consumers at the centre of health policy, services and research, says Debra Kay. A five-year partnership between consumers and researchers is showing how sharing research can generate new knowledge, greater understanding and better health in areas as diverse as breastfeeding pre-term infants and preventing stillbirth.
Helen Dickinson reflects on a recent project she led exploring consumer perspectives of the National Disability Insurance Scheme, co-produced with a group of individuals with disability. The research was designed “to give voice to those who we often hear less from in debates around the NDIS – the consumers of the scheme and people with disability more broadly”.
In the case of clinical trials, worlds are colliding to drive greater consumer involvement, according to Janelle Bowden. Leading the charge are health consumers themselves. The internet has made information more accessible. Social and patient networks provide connection to peers with the same health issues. Patients are sharing data and experiences about their symptoms and treatments, identifying areas of unmet need and unanswered questions, and advocating for research.
Anthony Cunningham notes that funding strains have not only inhibited the translation of research into new healthcare practice, but it has also pushed researchers further away from patients. But the good news is that the Medical Research Future Fund is already having an impact in financing Australian Health Research Translation Centres, bringing together researchers, practitioners and patients to accelerate the translation of research into new treatments.
But it is not all good news. Andrew Phillips says until the level of access to services, and the health profile of people living in rural areas reaches that of major cities, the NHMRC needs to commit a greater level of research funding to rural and remote health priorities.
And as Janney Wale concludes, we need to increase our knowledge and experience in terms of evaluating the burden of health conditions, their treatment options and natural progression. She makes the obvious but often overlooked point that: “This work is most effectively achieved by working with patients and consumers.”