industry & reform
Do you think the extended lockdowns are an opportunity for healthcare providers to integrate more consumer voices into the delivery of their services ? Speaking as a health professional myself , and not coming from a consumer perspective , I think so many of us can presume what is in the best interest of consumers or what ’ s going to help them . And I think most health professionals get into health because they do want to make things better for consumers . But I think the COVID pandemic , and some of the mental health implications it ’ s had and continues to have on us all , means we can probably learn a lot more from people who ’ ve experienced acute mental health concerns , given that they understand not only the health services and systems but they ’ ve had to work towards adopting recovery principles within themselves .
There was talk early on in the pandemic about how this might be an opportunity for us all to acknowledge that mental health concerns are something that we should talk about more and be more aware of . What I hope happens is that we ’ re also aware of consumer ’ s expertise . People who ’ ve been through some of these mental health concerns have a lot to offer the mental health system , and other consumers of services .
What do you think healthcare employees and organisations can do to involve people more in the design of their health care ? I think so much that ’ s done in mental health and health more broadly is well-meaning , but not necessarily engaged enough with people who ’ ve actually experienced those concerns . It sounds so simple ; it almost sounds trite and I ’ m almost wary of saying it . But I think the most important thing they can do is listen .
Do you think there ’ s a cultural shift required to push this model forward ? I do . I think there ’ s a lot of stigma , and also a really entrenched power hierarchy within health . I ’ ve had the privilege of working in a range of areas , and the way that I see how the hierarchy ’ s playing out within different professions is , at times , a barrier . When we ’ re talking about bringing consumers into that hierarchy , and actually treating them as equal partners in what we do in the health system , I think that requires a big change in mindset .
I think some health professionals can be very defensive and affronted by consumers . But I think all of us who get into health are motivated because we do genuinely want to make things better . So if we start to see partnerships with consumers as equals , rather than us doing something for consumers or to consumers , we will start doing things with consumers .
When I started getting interested in doing research with consumers six or seven years ago it was really quite rare , and people would stare agape , because they didn ’ t really understand the idea of consumers working on a research project as equals , and not just as participants .
Even in that short period of time it ’ s becoming more and more recognised as valid . Now , I hear people say , ‘ Oh , if you ’ re not going to do research with consumers , how do you know that it ’ s going to be relevant ?’ So I do see that shift happening . I think it needs to happen more . I don ’ t think we ’ re there yet . It ’ s a cultural shift , and we just need to keep encouraging people to engage with consumers as partners .
You ’ ve said that about two-thirds of your research has been co-produced with people with lived experiences of illness . How has that improved the quality and the impact of your research ? It ’ s improved it no end . There are so many insights that consumers have had in research projects that couldn ’ t have come from other health professionals . It ’ s changed the way that I approach defining research questions . And it ’ s also really fun . That ’ s not to downplay that it can be difficult , and there ’ s lots of barriers to getting enough resources to ensure that consumers are paid for their expertise . But it ’ s actually really enjoyable sitting there trying to solve problems with a multidisciplinary team , including consumers who previously would have been left out of research . So it ’ s valuable , it ’ s fun , and I guess there ’ s a sense of justice as well . It ’ s not just me sitting in my office assuming what consumers need , but actually really engaging in what research questions we should be asking in the first place .
How do you think policymakers and people who actually provide the funding for these services should integrate the voices of people who are accessing the healthcare system ? I think it ’ s really varied . There are some policymakers that embed this in from the
“ There are so many insights that consumers have had in research projects that couldn ’ t have come from health professionals .
beginning , there ’ s some who ’ ve never even thought about doing it at all . It really varies across jurisdictions , across services , and I think we all have a long way to go .
The National Health and Medical Research Council has started a consumer panel , which I think is great , because if we are funding research from public money , I think it ’ s important that consumers are involved in some kind of decision-making process around how that money is spent .
What would you say are the key barriers that might be preventing the system from developing into a more consumer-led model ? The first is stigma . There ’ s often a stigma for people to talk about their lived experience . And we often assume that experience is not as important as clinical knowledge . I think we have to address that and show that we actually do value people ’ s experiences , just as much as we value clinical experience .
The second issue is around power . There ’ s a hierarchy in healthcare , and when consumers are brought into the hierarchy they ’ re often at the bodttom . So I think that power dynamic does need to be addressed .
The last barrier is that there ’ s not necessarily a defined way of how to do this . I get health professionals coming to me saying , ‘ Look , I do want to co-produce with consumers . I don ’ t even know where to start . I don ’ t know what I should be doing .’ And with every project the way that you co-produce with consumers is going to be different because everything we do in health is very varied .
The first step should always be talking to consumers to find out how they want to be involved . I think in general people fail at that first step because we have a lack of culture around how to do this , they don ’ t even know where to go .
I think we just need to keep doing this , and keep chipping away , and keep making this the normal way we do everything in health . ■ nursingreview . com . au | 9