On Monday, at a workshop organised by the Health Research Authority, we learned that only 20% of the COVID-19 research proposals reviewed by Research Ethics Committees in the past few weeks contain any plans to involve patients, carers or the public. This is down from nearly 80% in ‘normal’ research plans. What’s going on? And does it matter? Yes it does – and this is why.
Researchers have done an amazing job pulling together plans for complex research studies in a matter of days. Ethics committee members have risen to the challenge and reviewed proposals incredibly quickly so that studies have been able to move from the ideas stage to recruiting participants in a matter of weeks. It’s vital that this continues.
But we know that by involving people on the receiving end of research – patients, carers and service users – we can improve the quality of research. We get research that is more likely to deliver to time and target. We ensure that research recruits participants who reflect the population who are most at risk from a condition – for example people from black and minority ethnic communities.
We also know that in the HIV/AIDS epidemic in the 1980’s, much research effort was wasted because people living with the disease didn’t trust the research community. This meant that they didn’t take part in research, or that they pooled the drugs that they were given as part of clinical trials to avoid being given the placebo. This situation only changed when researchers and people affected by HIV/AIDS came together to plan, run and share the results of research.
Some COVID-19 research is involving patients and the public – work done by Imperial College and Manchester University Hospitals NHS Foundation Trust in the UK and the Telethon Kids Institute in Australia are notable examples. And there are others. These examples have shown that, like researchers and ethics committee members, patients, carers and service users are also willing to respond quickly (sometimes in less than 24 hours) to requests for help.
But these examples are patchy. Many researchers feel they don’t have time to involve people – or they don’t have easy access to people they would find it helpful to speak with. Until very recently there has been no national leadership on this issue. This is why the workshop organised by the HRA on Monday was so important. It aimed to explore the barriers to carrying out meaningful patient and public involvement in COVID-19 research, and to develop solutions. It was just a start. But we’re confident that it will lead to an approach that will enable all COVID-19 researchers who are studying people or human tissue to get rapid help from people who are most affected by COVID-19 – be they people from black and minority ethnic communities, people living with pre-existing medical conditions, older people or other groups.
Hats off to so many amazing researchers for putting research plans together in a matter of days – research that will hopefully lead to thousands of lives saved. Hats off to ethics committee members too. Now let’s enable people on the receiving end of this pandemic to help the research effort.
Facilitator, Charities Research Involvement GroupBec Hanley
Consultant on involvement in research and advisor to the James Lind AllianceMaryrose Tarpey