AMRC members and patient groups have long told us that people want the opportunity to be involved in research but often have no idea how to go about it. This week, a brave report from the NIHR (discussed in this article from Sunday’s Observer) explains why that might be. Mystery Shoppers visited 82 hospital sites in England and found that 91% did not have any public information about trials at their hospital and of the 40 Patient Advice and Liaison Services (PALS) only 3 had any information on research.
Better systems please
Perhaps this is a somewhat artificial experiment; after all it’s not every day that a member of the public walks into a hospital off the street asking to join a clinical trial. But the point of the study is an important one – we need many more opportunities for patients to be involved in trials. And that can’t happen if no one knows what trials are taking place and where they might be. So although there is a UK Clinical Trials Gateway, with its own mobile app no less, people are telling us we need a “clinical trials gateway plus” with clear information on trials in their area, links to support groups and the opportunity to self-refer.
Once a trial is public, a huge dating exercise is needed to link researchers to patients of the right clinical status who want to be involved in research. That’s why patient records systems like the CPRD that enable researchers to search for the right participants are so important.
Its not all bad news – there has been progress. 99% of trusts are doing at least some research and the number of patients on trials almost tripled between 2007/08 and last year. But we have some way to go before we can meet the commitment set out in the current NHS Constitution that:
…. the NHS will do all it can to ensure that patients from every part of England are made aware of research….
And that’s before we get to the aspirations for the new NHS Constitution currently out for consultation, which includes a commitment:
…to inform you of research studies in which you may be eligible to participate.
But it’s the people that make the difference
Systems are important but it’s NHS staff who could really make the difference. In October 2011, the HSJ surveyed hospitals and found that 61% of NHS staff felt that research was “peripheral” to their Trusts’ activities (£).
Richard Stephens, Chair of the NCRI patient liaison group recently wrote this very interesting report Action on Access, saying:
- Clinicians need to be “trial friendly and trial wise” routinely discussing trials suitability with their patients;
- Patients should have the right to be informed about relevant trials; and
- All must have a chance to take part in trials –the old, those from minorities and from other vulnerable groups are even less well represented on trials than the rest of us.
What are the AMRC doing?
We’ve talked a lot over the last few months about the importance of making the statutory duty to promote research something that works on the ground. Charities, with their active patient groups and objectives to support translational research and clinical trials, have a strong interest in helping the new NHS structures get up and running and effectively focused on research.
So we are leading a project to showcase what these new institutions are trying to do and discuss how charities can best work with them. We’ve been to see how this is working in practice. And we held a workshop on 10 December of researchers, policy makers, clinicians and funders. These were the themes:
- There is a bewildering array of organisations for researchers and clinicians to understand and work with – and it needs a bit of demystification
- Patients need to be involved in research from the planning stage, through trials and on to dissemination
- All NHS staff need training on how they can drive research and the new Health Education England Authority will be crucial in that.
But its more than training – NHS staff also need adequate time to pursue research as part of their daily activities and proper infrastructure to support them as they do that. Research is simply not something that can be done in the margin of the working day.
The results of our 10 December workshop, along with a House of Lords meeting with MPs and peers in January, will be incorporated into our ‘Vision for Research in the NHS‘ which we will publish in the Spring. This document will provide some of that demystification and will help charities and the wider medical research communities work together to make research easier.
We are also providing evidence to the Joint Committee of MPs and Peers scrutinizing the draft Care and Support Bill to encourage Health Education England to focus on the ways to educate and encourage NHS staff to take research seriously.
We are responding to the Consultation on the NHS Constitution including the much needed changes to patient data that will make linking researchers with patients easier. And there’s still time for you to add your comments.