Will you share your patient records?

The Wellcome Trust has long been a strong advocate of making the best use of data resources, and this includes information in our health records. The Trust is this week funding a national advertising campaign in association with other leading medical research organisations to explain how sharing data saves lives. The Wellcome Trust’s Head of Policy, Nicola Perrin, discusses the importance of sharing our patient records.

Sharing our data can save and improve lives by providing researchers with the resources they need to answer a variety of important questions. These include understanding the causes of disease, the effectiveness of new treatments, the safety of drugs and monitoring the spread of disease outbreaks. In the past, health data has helped uncover the link between smoking and lung disease and alleviate concerns about the link between the MMR vaccine and autism. Accessing our records can also help researchers find participants that fit their criteria to invite to take part in clinical trials.

The information held by the NHS, through patient records of the whole population, is therefore a real treasure trove for researchers, but for too long it has been difficult for researchers to access this information.  At the Wellcome Trust we are really pleased to see the Government and the NHS introducing new systems that will allow researchers to have greater access to this vital data.

But patient records are both personal and sensitive. There must be appropriate safeguards in place and the general public must be confident that the security of their personal information will be protected. Without public trust, biomedical research can’t reach its full potential.

Ensuring such trust requires us all to have a much better understanding of how our patient records can be used. Many people I have spoken to are much more concerned about their GP’s receptionist seeing their patient record than they are about an anonymous researcher, who they are very unlikely ever to encounter, seeing a few lines from it. A number of recent surveys, have shown that the public are generally supportive of sharing anonymised data for research.

One important thing to get across is that, in the vast majority of studies, researchers will only have access to anonymised data.  Where researchers do need to see identifiable data they must get consent from you through your GP or, if this is not possible for example because a study involves tens of thousands of patients, there must be specific approval for the research from the independent Confidentiality Advisory Group.

Secondly, of course privacy is important.  All research using patient data must be approved by an ethics committee, and researchers must abide by strict agreements, setting out what they can and cannot do with the data.

And finally, people do have a choice. The NHS leaflet sets out that if people do object to sharing their personal data, they can ‘opt-out’.

For the last five years, we have been encouraging the Government and the NHS to do more to raise awareness about how and why patient records are shared.  We are therefore excited to see this finally happening, with NHS England sending a leaflet to all households in England during January, which explains just that.

To coincide with this leaflet-drop, we have worked with more than 40 other medical research charities, the Medical Research Council and the Academy of Medical Sciences, to run a national advertising campaign explaining why we believe sharing patient records helps improve and save lives.  This is the first time the Trust has been involved in this type of campaign but it’s an issue we’re passionate about.   We think it is right that this is an opt-out system, rather than opt-in, and we want to ensure that if people decide to opt out, theirs is an informed decision. The more people who allow their data to be shared, the bigger the dataset, the better the research conducted.

I’ve not yet received my leaflet from the NHS but I look forward to getting it. Personally I have no objections to sharing my data in this way. But our role as the Wellcome Trust is not only to support research but also to help ensure the public have the information they need to make an informed choice on whether to share the information in their patient records. Sharing our data is the most painless way we can help save and improve lives.

For more information on how your data will be used and to decide for yourself, visit our campaign website: patientrecords.org.uk or the NHS site:  www.nhs.uk/caredata.