Speaking out and winning trust

Media release from the Wellcome Trust and the Medical Research Council

26 June 2007

Two of the UK's biggest medical research organisations - the Medical Research Council (MRC) and the Wellcome Trust - are calling on researchers, funders and medical charities to do more to convince the public of the benefits to society of allowing personal health information to be used in important medical research.

The MRC commissioned Ipsos MORI to look at public attitudes to and awareness of the use of personal health information in medical research. A separate study by the University of Surrey for the Wellcome Trust looked more broadly at the public's attitudes towards the governance of medical research. Their findings have shown that public support for research is strong, but more needs to be done to understand people's concerns in areas such as consent and confidentiality.

An Ipsos MORI survey of 2106 people and qualitative research (involving focus groups and in-depth interviews) for the MRC found that if the public is informed about what medical research entails, they are generally positive towards it, and more likely to take part. Ipsos MORI reported: "The key factor that might make people more in inclined to allow their personal health information to be used for medical research is information.If the public had more information specifically about the purposes of medical research, they are likely to be more inclined to allow their personal health information to be used for that purpose."

Echoing these findings, the Wellcome Trust/University of Surrey research found that despite low levels of awareness, participants were keen to have more information about biomedical research "and that they needed and wanted to know more than they currently did". People taking part in the Wellcome Trust study indicated they were not unwilling to provide personal data for research if they understood why it was wanted and had confidence in the integrity of the research process. But the report found "this confidence could be undermined by the involvement of particular actors: GP receptionists, insurance companies, and other non-health or non-research agencies."

The Ipsos MORI report for the MRC found that seven in ten people were likely to allow their personal health information to be used in medical research. Of those that were not happy for their information to be used, 28 per cent cited concerns about privacy. Other common concerns focused on potential abuse and loss of control, information 'falling into the wrong hands'. The Wellcome Trust research found that anonymity was seen as being important in biomedical research. But it also uncovered "scepticism about guarantees of anonymity, based on people's experiences in their everyday lives of anonymity and confidentiality being breached through error, deliberate intrusion or lack of care." But the researchers found this "reflected more general concerns about privacy, hacking and surveillance in contemporary times". Family doctors were seen as trusted and a good mediator between individuals and research.

Reacting to the findings, the chief executive of the Medical Research Council, Professor Colin Blakemore, said: "Research on the medical or health records of large numbers of people can provide important information that would be difficult or impossible to gain in any other way. The study of large groups of patients has already helped to save lives. For example, the Heart Protection Study has shown that reducing cholesterol by taking statins reduces the risk of heart disease. Richard Doll's famous research on thousands of British doctors first established the link between smoking and cancer. And the UK Biobank is a new study of half a million people, aimed at working out how our genes, lifestyle and environment interact to affect our health.

"This Ipsos MORI research for the MRC demonstrates the work we have to do to convince the public of the enormous benefits to be gained through medical researchers having well-regulated access to patient databases. People might be more positive towards medical research if they are given more information about what it involves. The problem for scientists is that people generally haven't given it much thought. Changing that could have a dramatic impact on the public's willingness to allow access to records and hence on our knowledge of what makes people ill."

The Director of the Wellcome Trust, Dr Mark Walport, added: "This work confirms that the general public are strongly supportive of medical research and want to know more about it. Research using personal information is sensitive and the public are concerned that confidentiality is maintained and that their health information is held securely. The public trust doctors and scientists and it is imperative that this trust is maintained by continuing dialogue."

Contact

Katrina Nevin-Ridley
Head of Media Relations
Wellcome Trust

T +44 (0)20 7611 8540
E k.nevin-ridley@wellcome.ac.uk

Notes for editors

Main findings from the Ipsos MORI study

Public awareness of the use of personal health information for the purposes of medical research is low. They know that medical research is undertaken, but few have a good understanding of what it entails, who does it, and for what purpose.
The two key pillars of confidentiality and consent feature highly in the debate over what information should be available, to whom, and in what circumstances. These two themes are central to building trust.
If the public is informed about what medical research entails, they are generally positive towards it.
Communications are key to building public trust.
The key to effective communication on the subject is the need to keep terminology simple and tailor communications for a lay audience.
Views of people with long-term conditions are generally more positive. They have more experience of health services and therefore a better knowledge of medical research and personal health information than the general public.
Attitudes to medical research are generally positive and if communications are handled well, this might increase propensity for agreement to use personal health information for medical research purposes. This includes communicating the value of such use of medical records (possibly by giving examples of research that could not have been done without such access and the adverse effect of such an eventuality on public health).

Main findings from the Wellcome Trust University of Surrey research

Across public and patients there was strong support in principle for the value and importance of carrying out and participating in biomedical research.
Altruistic motivations were identified as the primary reason why people would take part in biomedical research.
Participants all felt that any information unique to an individual could be considered to be personal data but whether this was seen as being of any consequence or not depended on how it linked to questions of anonymity and confidentiality.
People find it easier to envisage anonymity for tissue samples rather than personal information.
Aggregate-level data and data about an individual that could not be linked to that individual were seen to be no longer personal.
'Drug' research companies were seen as trustworthy and professional because of their focus on doing research.
Researchers need to proactively engage with participants' desire for more transparency about the research process, including why certain data are required, how data are stored and who will have access to their data.
Connecting for Health was viewed positively where it offered the promise of practical health benefits for individuals.
Research participants require evidence and reassurance on the security of databases.
The ideal brokers of research participation are GPs, although participants are also mindful of the issues of workload that personal contact would entail.
Reflecting people's wishes for more active involvement, a website (one-stop shop) could be developed where participants could access information on aspects of participation in research, e.g. rights, explanation of terms, route for complaints, FAQs, links to other relevant sites.

Ipsos MORI technical note

This programme of research involved both qualitative and quantitative research among the UK general public. The details of each stage of the research project are as follows:

General Public Qualitative Research
Three workshops were conducted between 29 July and 5 August 2006 at three locations across the UK, supplemented by six in-depth telephone interviews.

General Public Quantitative Research
Questions were placed on the Ipsos MORI Social Issues Omnibus. A nationally representative quota sample of 2106 adults (aged 15 and over) was interviewed in 212 sampling points throughout Great Britain and Northern Ireland. Interviews were carried out face-to-face in respondents' homes. Fieldwork was conducted between 14 and 18 September 2006. Data are weighted to match the profile of the UK population.

For further information about the fieldwork or methodology, please contact Michele Corrado or Adam Palenicek at Ipsos MORI on 020 7347 3000.

Text notes

1. The phrase 'personal health information' was deliberately not defined for respondents, in order to gauge the spontaneous associations they had with it. Most commonly the public associates the phrase with GP records or with medical records.

2. Areas of information they are likely to require include: whether they would have control of the information and its potential uses and confidentiality of the information.

3. Trust in doctors (to tell the truth) in MORI's long-standing work from 1983-2006 has always been shown to be high. Source: Ipsos MORI/RCP/BMA/Cancer Research Campaign/The Sunday Times.

The Medical Research Council

The Medical Research Council is dedicated to improving human health through excellent science. It invests on behalf of the UK taxpayer. Its work ranges from molecular level science to public health research, carried out in universities, hospitals and a network of its own units and institutes. The MRC liaises with the Health Departments, the National Health Service and industry to take account of the public's needs. The results of MRC's research have led to some of the most significant discoveries in medical science and benefited the health and wealth of millions of people in the UK and around the world.

Wellcome Trust

The Wellcome Trust is the largest charity in the UK. It funds innovative biomedical research, in the UK and internationally, spending around £500 million each year to support the brightest scientists with the best ideas. The Wellcome Trust supports public debate about biomedical research and its impact on health and wellbeing.