One More Reason Why Access To Health And Care Data Is Important To Our Wellbeing

One of the Patient and Public Involvement (PPI) members for the PEACH study, Graham Prestwich, discusses their involvement with the study, with a particular emphasis on how the team are processing patient data without consent, and the importance of such practices during a global pandemic when research needs to move fast to inform and guide better patient healthcare.

The relevance and potential of authentic patient and public involvement to influence health and wellbeing in health and care research and policy was brought into sharp focus a few days ago. I heard BBC ‘Inside Science’ talking about the global health burden of resistance to antibiotics on the same day that I had participated as a public member of a research group investigating the use of antibiotics in the first wave of the coronavirus – 2019 epidemic in England and Wales.

As we grapple with the challenge of reducing the intolerable variation in the outcomes of care between our communities that has become even more apparent at least in part because of the system disruption that has taken place over the last two years, we must all think and act more deliberately and discover what to do differently to do better.

One thing to carefully consider is using antibiotics only when there is a clear indication to do so and reduce their general and widespread use where benefits are far less likely to be seen.

In 2015 the National Institute for Health and Care Excellence (NICE) published guidance on the use of a test to guide antibiotic treatment in patients with a suspected serious bacterial infection. The test can detect a so called ‘marker’ called Procalcitonin that shows whether or not the patient has an active bacterial infection. The test is not perfect, there is a range, and the interpretation is not 100% accurate. The aim is to prescribe antibiotics for patients who show a highly positive result and are therefore more likely to respond well to antibiotic treatment. The guidance that NICE published stated that there is insufficient evidence to make a formal recommendation and more research is required. As a result, the use of testing for antibiotic use is down to local clinicians to decide and across England and Wales there is considerable variation in practice.

A UK research group are tackling this question in a study known as PEACH, Procalcitonin: Evaluation of Antibiotic use in COVID – 19 Hospitalised Patients. The study will assess whether the use of Procalcitonin (PCT) testing, to guide antibiotic prescribing safely reduces antibiotic use for patients who were hospitalised with COVID-19 during the first wave of the pandemic. Access to patient data for the purposes of this and other COVID -19 related studies was granted to NHS Digital by the Secretary of State for Health as part of the management and mitigation of the spread and impact of the disease.

Several patients and members of the public are members of the study steering group and attend the formal research team meetings and participate in the research updates and discussions. Importantly, the public members have an equal opportunity to contribute and ask about any aspects of the study.

We also hold a separate occasional meeting for the public members of the steering group to discuss various related topics and our last meeting was earlier the same day as the BBC was talking about antibiotic resistance. At our meeting we talked about the same global research led by Professor Chris Murray and published in one of the leading medical journals, The Lancet. It is a huge piece of work and involved a long list of international collaborators. The main conclusion is that in 2019, 1.25 million people died due to bacteria developing their own resistance to antibiotics. This is 1 in 50 of all deaths worldwide. (The World Health Organisation report 55.4 million deaths worldwide in 2019)

Regarding the PEACH study that is being carried out now, this is what is known in medical research as a multi-centre, retrospective, observational data study. This means that it involves many different hospital centres across England and Wales. It also means that, as different approaches to the use of antibiotics were adopted in different hospitals, it is valuable and important to look back and compare what was done at the time with what actually happened because of that action. Finally, it means that the research team are gathering the data from different hospitals into a single big picture to learn as much as possible from what has been done to inform and guide the best approach for the future. Hence the value and importance of such work, making the best use of what is already known but it is only when all the separate bits are brought into a single place and scrutinised as a whole can we learn most about how to make better informed clinical decisions in the future. The more these data represent a true picture of everyone who was treated the more likely the results will be able to help inform ways to reduce inequalities in outcomes of care.

The widespread and common use of antibiotics make this a topic of great public relevance and interest. Most of the study has so far focussed on the practical aspects of data collection and input with the appropriate and proper data sharing agreements in place and formally approved. As this work is closer to reaching the conclusion it is appropriate to consider in more detail and more thoroughly how to share these findings most usefully and most effectively with patients and the public who, from time to time, may well be participating in shared care and shared decision-making conversations with patients, families and clinicians about the next steps in treatment and the best and safest options to choose.

With this last question in mind, we would be pleased to hear from people who have views and ideas about sharing the results with anyone for whom it may be of interest or particularly relevant.

I am most grateful to the public members of the steering group, Margaret Ogden and Chikezie Knox-Macaulay for their insightful guidance and valuable contributions and all the steering group members for their enthusiastic support.

–  Graham Prestwich