Jonny Currie is a GP in Newport, south Wales, public health doctor, honorary clinical research fellow at the Division of Population Medicine at Cardiff University and is also Co-Director for the 19 Hills Community Interest Company, a social business created to tackle health inequalities in east Newport through innovative services and partnerships.
Something odd has developed in healthcare over the past couple of decades. It is now well recognised involving patients in decisions regarding their healthcare makes sense: it leaves patients more satisfied, improves treatment outcomes, creates more realistic expectations1 and is generally just the right thing to do. Healthcare teaching has absorbed and incorporated this maxim; while some disciplines may be more progressed in enacting the principle, it seems the direction of travel and for now is unlikely to change.
Yet, for all this progress, patients are somehow left out of discussions and decisions surrounding how we plan, run and evaluate our health services at a management level. How can this be? Leonard Kish in 2012 argued that patient engagement is the “blockbuster drug” of the century;2 it must be one bitter pill to swallow if most of the healthcare system seems resistant to take it.
Patients have considerable lived experience of the conditions we are trying to treat.
Patients have considerable lived experience of the conditions we are trying to treat. They also live, obvious though it is to point out, actual lives, which we don’t always know how to work around when we design services and ways of managing people’s health needs. Many of them have experienced harm from the healthcare system and might, were we brave enough to ask, be open to working with us in mitigating such harm in the future, through reflection, dialogue and incremental changes. What else do patients have that we lack? Community and social networks, time and skills, passion and motivation, a desire for positive change. Probably a lot more, but if we don’t ask we won’t find out, and if we don’t explore we’ll never know the benefits.
What might be holding us back? I’ve heard plenty of opposition – patients will just use the opportunity to complain or to axe-grind. We might not get the “right” sort of patients getting involved. The nature of planning conversations might not be “appropriate” for patients to be involved with, even though it’s not discussing individual identifiable information. All of these in my view are weak arguments from a place I know is based partly on fear of the unknown.
This in turn destabilises our place on the pedestal of decision-making, and with it our professional status.
Fear of the unknown is understandable, but I truly don’t think we need to be afraid. I suspect what we’re up against is more than just this however. It is reality of professional hegemony that feels under threat from diverse voices who could if they are allowed force a rethink in how we manage and respond to people’s health concerns. This in turn destabilises our place on the pedestal of decision-making, and with it our professional status.
With issues of accountability, variation in care and wider challenges causing politicians and the health professions a collective headache though, perhaps we should think more creatively than “more of the same” in funding, staffing, capital and materials. Can we design a healthcare system that is safer, fairer and more sustainable, without patient representation?
Deputy Editor’s note: see also Patricia Wilkie on patient participation groups here: https://doi.org/10.3399/bjgp16X687613 and Jonathan Ives et al on issues in shared decisionmaking here: https://doi.org/10.3399/bjgp18X696557
References
- McCarron, T.L., Moffat, K., Wilkinson, G. et al. Understanding patient engagement in health system decision-making: a co-designed scoping review. Syst Rev 8, 97 (2019). https://doi.org/10.1186/s13643-019-0994-8
- Chase D . Patient engagement is the blockbuster drug of the century . Forbes.com [blog on the Internet]. 2012 Sep 9 [Accessed 16 July 2024 ]. Available from: http://www.forbes.com/sites/davechase/2012/09/09/patient-engagement-is-the-blockbuster-drug-of-the-century/ Google Scholar
Featured image by Markus Spiske on Unsplash.
It is so good to see a senior health professional talking about how we evaluate health services, involve local communities in planning and giving comment on how services can meet their needs better. I have conducted participatory research in poor working class communities for some years and it was often struggle to do research in this way when managers were not comfortable often with communities becoming confident and able to express and outline how services could better meet their needs. Confidence and belief in themselves was a challenge initially but once that hurdle was overcome it was brilliant to see such positive changes in how the local people got engaged with their health priorities and able to express their needs and services they felt needed to be aligned to meet their needs. As one Director of Public Health put it ‘I didnt realise community participation was like this.’ I used a variety of diagrammatic, participatory methods – priority matrix, body/social mapping, venn diagrammes etc. Most of these methods were developed in countries of the South where I also spent some years working as well and they were effective where language was also difficult/challenging. There are varous ways to consult local communities and I feel we need to be more open in how we approach community based research. It has been very satisfying and fun but also for those communities I worked in. It is one of these communities where the Sure Start programme was born in Liverpool and it has been very short sighted in the way the programme was removed/closed down across the country! Without community participation in assisting the design and priorities of health services it will be difficult to meet their needs and bring positive changes to their health!