Funding of health research is a crucial investment in the health of all Australians, but that value is only realised if funding is used wisely and effectively to conduct research that will either improve health outcomes, contributes new knowledge that stimulates further research or demonstrate that tests or treatments currently in use are not effective and should be defunded.
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.
The value that we get from our large investment in research is often reduced for many reasons but often it is because of communication failure. The researchers may receive funding but fail to either ask the correct research question or fail to design the correct methodology to answer the question. When researchers do get it right they may fail to enrol sufficient trial participants, or where it is not a clinical trial may fail to get sufficient data to make a statistically relevant finding. But the failure that I find the most wasteful is when the researchers are able to make meaningful and significant findings, either positive or negative, but those findings are not adequately communicated to facilitate uptake of the findings either as a change in clinical practice or in the case of basic science stimulate subsequent research.
Involving the community and consumers at all levels of research can help overcome many of the barriers to gaining value from research, particularly when consumers are involved in the decision making and planning stages.
The NHMRC’s Community and Consumer Advisory Group (CCAG) has been working hard 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.
The following is the paper developed by the CCAG and is awaiting review by the NHMRC:
Principles of Community Expectations and Consumer Value in Health Research
The Australian community, as the ultimate funders, research participants or health consumers, have clear and specific expectations of the benefits derived from health and medical research. People want cost-effective, accessible solutions. They expect NHMRC to invest our precious health dollars on the best quality research and researchers. It is essential that NHMRC’s competitive funding processes are able to identify the best value for money both in creating an innovative, capable and efficient research sector and in funding specific research projects that have the best chance of improving health outcomes through effective translation.
Community and consumer representatives can support researchers by ensuring that research projects meet society’s needs and expectations. Researchers should seek community and consumer involvement in the very early planning stages, including identifying community priorities for research. That involvement needs to be at a level that will have a direct effect on the development of the research project, and take into account the following principles.
Research that delivers value to and engages with the community
- The objective of the research is to improve the health outcome for the community generally, targeted groups within the community and/or people with a specific health challenge by:
- Contributing to the prevention of a health condition or the development of a new diagnostic test, treatment or service
- Improving the safety, quality, effectiveness, cost-effectiveness or access to an existing diagnostic test, treatment or service
- Facilitating the assessment, modification or deletion of an existing health service
- Adding to the current knowledge of:
- Basic science
- Healthcare service design, models of care and or services
- Public health and illness prevention
- Clinical diagnostics, treatments or care
- The research project involves community and consumers in a minimum of three key phases:
- Development of research concept/hypothesis/question and design of research project including consideration of partners, methodology and processes, and budget development including cost of community/consumer involvement
- Research including participant recruitment, consent and responsibility (ethics, governance) and oversight or governance of the conduct of the research
- Reporting, communications, publication including translation and implementation strategies or activities, or identification of subsequent research required.
- Research that delivers value to the community requires detailed strategic planning to ensure that the research is fit for purpose and likely to achieve its objectives. The researcher/project is expected to address minimum strategic planning elements including:
- Research objectives (including the problem being solved and how many Australians are affected) and how they will be achieved
- Proposed implementation pathway including potential next stages, and the implementation barriers and partners who could assist in overcoming the barrier
- Period of time to benefit being realised and whether strategic partners could assist in faster delivery of benefits.
- The benefits of the research are increased because the research project expects to:
- Address an area of urgent unmet need
- Reduce the frequency of unnecessary or inappropriate treatments or care
- Address an existing inequity
- Develop a unique treatment for which there are no current alternatives.
- To maximise the cost/benefit ratio for the community and research participants the project should address issues relating to safety, quality, efficacy, cost efficiency and equality.
- High quality research can deliver valuable products including IP, new researcher capability and resources, which can produce benefits extending beyond the research project alone. The products of the research project are expected to contribute to the future sustainability and capability of the Australian research sector.
As we increase the areas in which consumers are involved we need to ensure that we have adequate high quality consumer representation to perform these important roles. The CCAG has also developed a set of tools for determining the value of specific research to the community and consumers, and also tools to determine the value the consumer involvement has delivered for a research project, so that over time we can objectively demonstrate the value that having community an consumer involvement at every level of research can deliver.
