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Apr
5
2017

The glass ceiling of Patient and Public Involvement
by

In his first blog for us our new Head of Research and Evaluation Dan Robotham explains one of the reasons he decided to join McPin.

Dan Robotham, Head of Research & Evaluation

Health and social care research has a good public image. Polls suggest that university-based researchers are trusted by up to 90% of the public (Ispos Mori, 2014). This means that researchers are not subjected to the same public and media scrutiny as other professions (animal research is a possible exception). Unfortunately, high levels of public trust may also lead to public ambivalence. Researchers and their institutions are left to their own devices, trusted to do ‘the right thing’ and to find cures, treatments, and advances. This is a problem for those trying to facilitate Patient and Public Involvement (PPI) in research.

 

Having spent most of my career in health research, I feel that it would be better if the public were more aware of the processes underpinning it. Health research operates in a complex, politically motivated arena, and is accountable to many stakeholder groups with potentially conflicting views (patients, the public, family members, health professionals, academics, policy makers, voluntary groups, funding bodies, private companies, the Government, etc.). It is also big business, costing an estimated $200 billion per year worldwide (Glaziou & Chalmers, 2016). Universities are one of the largest ‘producers’ of this research. For them, generating income through external research funding is vital to their business model.

 

Universities know that research funding follows individual and collective scientific reputation, which is measured through proxies such as a scientist’s H-index, the impact factor of the journals they publish in, or (in the UK) a university’s overall performance on the Research Excellence Framework. These proxies for scientific success are of immense importance in academia, but have little meaning to anyone outside it. In fact, they are dull and incomprehensible enough to repel public interest. This diverts public attention away from the process of defining and monitoring scientific success, limiting public influence over how research is funded and allowing researchers to retreat into the background. The inability to break this cycle is perhaps the greatest failing of Patient and Public Involvement.

 

For some time, I’ve wanted to think about how research can be done better (in this case, mental health research). This is a major reason why I joined the McPin Foundation. Mental health has never had a higher public profile. The arguments for investment in mental health research are starting to bear fruit. There has never been a better time to discuss how the public can be involved in defining scientific success. Ultimately, health research is only successful if it improves people’s lives. Defining that cannot be done without involving the people affected.

 

The current paradigm of Patient and Public Involvement is not sufficient for this purpose. We need a new paradigm driven by enthusiastic and knowledgeable members of the public (especially those affected by mental health problems). I know from experience that there are many ‘non-scientists’ who are more than capable of understanding scientific research proposals, critiquing their merits and offering an informed view over relative importance. The next step is to apply these skills to make collaborative decisions in the circles where research funding priorities are decided. I am looking forward to exploring how we turn our aspirations into practice.

If you have any thoughts or comments on this blog please email Dan tweet @mcpinfoundation  or post on our Facebook page

References

Public Attitudes to Science 2014 – https://www.ipsos-mori.com/Assets/Docs/Polls/pas-2014-main-report.pdf

 

Glaziou & Chalmers (2016) http://blogs.bmj.com/bmj/2016/01/14/paul-glasziou-and-iain-chalmers-is-85-of-health-research-really-wasted/