The Consumer Health Forum’s Our Health, Our Community website is one of my ‘go to’ places for interesting ideas and debate on health policy issues. If you haven’t already checked it out – it’s at www.ourhealth.org.au and well worth a look.
I was browsing the Ideas Wall where people can post their own ideas for improving health care and can comment on others’ suggestions. One of the ideas that caught my eye was the following:
Every year a lot of money goes to research. It would be nice if everyday Australians could have a say on some of the research that gets funded. How about a citizen poll on research applications?
The benefits of greater consumer participation into health care policy making and service delivery are becoming more accepted across the health system. However, this attitude shift does not appear to have made it to the world of mainstream health and medical research.
The McKeon Review of medical research barely acknowledged the role of consumers in developing and implementing research projects, presenting them simply as the passive subjects of research.
This recent Croakey post discusses how crowdsourcing can be used to identify and fund ideas for medical research. Australia’s mainstream research community is a long from this type of innovative approach. Another post highlights the use of crowdsourcing to inform a PhD research project.
The NHMRC’s A Model Framework for Consumer and Community Participation in Research suggests the following ‘ideas for ensuring that decisions on what to research reflect the priorities of researchers and consumers:
- Host an annual consumer priority setting workshop;
- Identify the best point in the year to seek consumer views on research priorities;
- Plan the workshop in conjunction with some consumer advocates, who can ensure that it meets consumers’ needs; and
- Remember that consumer and community organisations have their own timetables and are often run on a voluntary basis. It is best to plan well in advance.
It also suggests the following strategies to support consumer participation in the structures of research:
- Ask consumer groups relevant to the research to consult with their members on research priorities;
- Ask research teams or departments to identify consumer groups relevant to their research (at local or national level);
- Contact these groups to ask for feedback from their members on research priorities); and
- Work with the consumer organisation on the details of the consultation methods.
All of the above strategies may be useful to a limited extent but they fall well short of giving consumers the capacity to drive research priorities and funding.
Perhaps consumer-driven medical research could be put on the agenda for greater attention and policy debate in the new year?
Here FYI are some of the other interesting ideas posted on the Ideas Wall….
Let’s have a nurse at every large school, especially in disadvantaged areas. They could provide ‘at school’ check-ups, family advice and weave preventative health into the school’s activities. Small schools could receive regular nurse visits
A free downloadable app with info about your local health service, with opportunity to log in and check appointments, check waiting periods, or update your own personal medical details.
When consumers don’t return to healthcare providers, they should proactively follow-up (letter, call, SMS) to find out the reasons why. This would give the provider better feedback and the opportunity to provide options to the consumer.
Provide those with chronic illness information about how to register for the safety net
There should be a label on complementary medicines saying they haven’t been tested. Otherwise how will people know that they might not be tested independently
My diabetes specialist has started to use SMS reminders for my appointment. What a great idea. When you have to go to heaps of different doctors’ appointments it’s hard to keep track of all the appointments
