The Cancer Patient Experience Survey 2011/12 is out today. This is a national survey by the Department of Health, asking cancer patients about their experiences. And for the first time, it asked about research. The interesting numbers are:
- 33% of patients said that taking part in research had been discussed with them
- of these, 95% were glad to have been asked
- of the patients who were not asked about research, 53% said they would have liked to have been asked.
33% of patients said that taking part in research had been discussed with them and of the patients who were not asked about research, 53% said they would like to have been asked
In 2011 an AMRC|British Heart Foundation|Breast Cancer Campaign funded MORI poll found that 72% of those asked would like to be offered opportunities to be involved in trials of new medicines or treatments if they suffered from a health condition that affects their day-to-day life.
And just last month, NIHR similarly found that 82% of respondents to their poll would like to be offered opportunities to be involved in trials of new medicines.
Of those who had discussed taking part in research, 95% were glad to have been asked.
This also supports what we know about public attitudes, people are keen to be offered opportunities to take part in research relevant to them and generally want to be asked. For example, of 1.2 million UK women contacted to take part in the UK Collaborative Trial of Ovarian Cancer Screening, only 32 complained they had been contacted.
Sharmila Nebhrajani, AMRC’s chief executive, summed this up:
Medical research charities, whose work is funded by patients and their families, know how important it is that patients are involved in research. These findings chime with our own analysis; 80% of patients would like their doctor to offer them the opportunity to allow a researcher access to their records, and 72% would like to be offered opportunities to be involved in trials, but the actual number offered that opportunity is far lower.
Last year’s Health and Social Care Act for the first time placed a duty across the NHS to promote research. Doctors and clinicians need to tell patients about research opportunities and charities with their active and powerful patient support groups could be a really important way to help publicise those opportunities.
As Shar mentions, the Health and Social Care Act 2011 placed a new duty across the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups to promote research. They are already beginning to build this into the system – with clinical commissioning groups required to demonstrate how they will support research to gain authorisation, and the NHS Commissioning Board’s draft mandate published in July including a section on research:
Objective 17: Ensure that the new commissioning system promotes and supports participation by NHS organisations and NHS patients in research funded by both commercial and non-commercial organisations, to improve patient outcomes and to contribute to economic growth through the life science industries
The draft mandate also included a choice framework outlining what choices patients can expect. This includes “choosing to participate in research”. This lists resources available to help patients exercise this choice including the UK Clinical Trials Gateway which aims to provide easy to understand information about clinical research trials running in the UK.
And the planned consultation (announced in the life sciences strategy late last year), on changing the NHS constitution so that the default setting is for patients’ data to be used for research unless they choose to opt out, is also an important step in improving research opportunities to patients. The results of this consultation will impact on how the NHS identifies and approaches patients to involve them in research projects. It’s important that the public have a say in how they want this system to work and this consultation needs to be accompanied by awareness raising so that we all have an opportunity to engage with the issues and really understand what a change might mean and have our opinion heard.
This is all really exciting stuff, but it is important to see this delivered. This survey offers a really good guide to how the NHS is doing at the moment. It would be valuable to repeat it as the new duty is implemented, so we can follow how effective the changes are in practice - as Cancer Research UK suggest in a blog post on the survey. And on the lay review, Simon Denegri points out, this is only a snapshot for cancer and it would be interesting to see how the picture changes for different conditions. Are as many patients being offered opportunities to take part in research? And does their interest in such opportunities change?
There is a big role here for charities to help change this picture and improve on the 33% who had the opportunity to discuss research. Charities can both support patients to ask about opportunities to get involved in research, and help publicise the opportunities and explain what getting involved in research might involve. Initiatives like the UK Clinical Trials Gateway - can only work successfully if patients are interested in research and know to hunt them out and use them, and if doctors are confident to refer them to it.