I have had a number of meetings and conversations over the last few months – since the outbreak of Covid-19. I think it fair to say that patients and members of the public who have been actively involved in the past feel that their voices are not being heard – reactions range from amazement, frustration and even anger.
These feelings are echoed by many charities, other organisations and by research teams who were similarly surprised at the lack of the patient voice.
Let me make it clear that this isn’t just about patients and the public being excluded and ignored – it was about the difference that such involvement might have made. It was about the fact that people were seeing studies that weren’t explained in understandable language, that used methods were perhaps inappropriate, had questionnaires that were far too long – the very basic things that are noticed and changed as a result of engaging and involving patients and the public. It is the essential the added value of external perspectives have been missed. This potentially results in a waste of public money, research effort and gaining a better understanding of Covid-19 that maybe means more lives lost.
I would like to unpick, if I may, some of the contributing factors that may help us reflect and think about in our discussion and what is needed in the future.
First of all remember it is a pandemic. It is life-threatening – our body and mind react often beyond our control. We revert to our base instincts and any training. My cancer may have been twenty-five years ago but I remember the closing down, the doing what had to be done, the importance of family, friends, colleagues – just trying to survive.
I think it is right to say that the medical community, researchers and clinicians reverted to base instincts and training – moving with speed, returning to standard emergency protocols and the raced to write research proposals for something nobody knows about and to seek funding. It is understandable but I still don’t think it is acceptable – so how should we move forward?ccc
There are perhaps a further 2 factors to bear in mind.
Much of the initial research about the Pandemic was about science – laboratory pre-clinical research or non-clinical epidemic computer modelling. There are some examples of how patients and the public have helped inform research in pre and non-clinical research but they remain few and far between. I look to people like Dr Emma Dorris in Dublin and the Shared Learning Group in the UK to learn. But it is NOT an area where Involving Patients is widespread so that may explain the lack of involvement. It is therefore a time for reflection and subsequent action.
The second of these additional factors is that this was not a cancer, stroke, heart disease, Parkinson’s disease for whom there are charities, support and self-help groups – where there are strong and effective patient voices and leaders. Added to this Covid-19 is adversely affecting people from Black and Minority Ethnic communities who are few and far between in the strange world of Patient and Public Involvement. But in the UK during the AIDS/HIV period, there were exceptional examples of patients being involved with the science – why and how did the learning from this get lost.
So, what has been happening in the England
- Local patient research groups turned to focus their attention on Covid – Nottingham, Manchester and elsewhere
- The Health Research Authority held an online meeting and have now set up a matching service for researchers and patient groups https://www.hra.nhs.uk/about-us/news-updates/public-involvement-covid-19-research/
- Health Data Research https://www.hdruk.ac.uk/covid-19/patient-and-public-voice-in-covid-19-response/
- National Institute for Health Research NIHR have highlighted the need for Mental Health https://www.nihr.ac.uk/documents/highlight-notice-covid-19-and-mental-health/24978
- #WhyWeDoResearch campaign has held weekly twitter chat
The Academy of Medical Sciences – with the Association of British Pharmaceutical Industries, the Association of Medical Research Charities and NIHR – joint workshop with a report due soon https://acmedsci.ac.uk/more/events/patient-and-public-involvement-covid-19
But all of this doesn’t get away from the basic question ‘whose research is it in 2020?’
Public Funded Research (by taxation or donation) can no longer be the sole prerogative of academia, science or data managers – it must always have gathered the opinions, perspectives and challenges raised by patient experience, taken account of the patient voice, provide examples of how they have held meetings where patients have had presence and held influence along with actual evidence of the changes and impact that has had.
Ireland has a different approach – the focus is more on patient advocacy and empowering the patient voice – IPPOSI (Irish Platform for Patient Organisations, Science and Industry) provided a clear and unambiguous statement in response to the crisis – that the patient perspective is understood alongside the broader public health considerations to strengthening the mutual commitment https://www.ipposi.ie/2020/05/12/6159/
Health Research Charities Ireland https://hrci.ie/wp-content/uploads/2019/09/HRCI-Position-Paper-2019-1.pdf has rightly used research to find out what has happened to Patient and Public Involvement and also address the health needs of the population.
Ultimately, this is about more than just Trust. It is, to quote Dame Onora O’Neill, the philosopher, who says this is about ‘trustworthiness’ – Involvement provides the opportunities to illustrate trust in our behaviours and demonstrate it in our activities. This is especially required at the current political climate, the pandemic and in the coming years.