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Understanding patient data

Source: NHE Mar/Apr 17

Nicola Perrin, head of policy at the Wellcome Trust who is leading the Understanding Patient Data initiative, explains why clinicians have to strike the balance between protecting privacy while sharing information to improve the health of patients and the population.

The information held in medical records has huge potential to provide better care, improve health service delivery and transform medical research. For example, patient data has been used to demonstrate the safety of the whooping cough vaccination for pregnant women, and to prove the effectiveness of new cancer treatments. Data can be used to help understand more about disease, to improve diagnosis and develop new treatments, to monitor safety, to plan services and to evaluate NHS policy.  

But patient data is both sensitive and personal. It is essential that there are robust safeguards to protect patient confidentiality when data is shared. Patients, the public and healthcare professionals must have confidence that data is appropriately collected, stored and used.    

We know that awareness of how data is used is currently too low: a study commissioned by Wellcome last year found that only 33% of people were aware of how data is used within the NHS, and awareness was even lower in relation to uses by academics (18%) or commercial organisations (16%). However, studies also show that the more information people have, the more comfortable they are with wider uses of data – provided there is clear public benefit. But providing only a little information, without clear answers about benefits, risks and safeguards – as with –  can lead to greater wariness. 

It was for this reason that the National Data Guardian, Dame Fiona Caldicott, recommended in her 2016 report that “there needs to be a much more extensive dialogue with the public about how their information will be used”. 

Understanding Patient Data has been set up in response to this call, as a new independent collaboration to support better conversations about the uses of health information. We are hosted by Wellcome, with funding and support from the Medical Research Council, Department of Health, Public Health England, and the Economic and Social Research Council. Importantly, we operate independently of the views of any of the individual funders, and are working across the sector with support from medical charities and patient groups. 

Our aim is to provide objective evidence about how and why data can be used for care and research, what is allowed and not allowed, and how personal information is safeguarded. By talking clearly and openly about the benefits and risks, we want to help people to make informed decisions when they have options about how data might be used. 

Vocabulary around data use 

One of our first priorities has been to look at the vocabulary used to talk about data use. At the moment, many different words are used to describe the same thing, and many of those words are unnecessarily technical, which is leading to increased complexity and confusion. Terms like ‘pseudonymised’, ‘key-coded’ and ‘de-identified for limited disclosure’ do not help build confidence. 

We have undertaken an exercise to look at the best words and imagery to use to talk about the use of data for care, treatment and research, and to describe different levels of identifiability. The results have been very illuminating. For example, although many of us routinely use the phrase ‘direct care’, we found that it was meaningless to the public. As one participant said: “It makes me think of health insurance or credit cards.” The phrase ‘individual care’ seems a more effective way to help people understand the concept. Similarly, if direct care does not mean anything as a phrase, talking about ‘purposes beyond direct care’ clearly will not work. Getting the words right is an important part of moving towards transparency. The full results of this work will be available on our website soon, together with a first set of resources and case studies. 

Data champions 

We also want to develop advocates who can champion the responsible use of data. In particular, we see healthcare professionals as the gateway to the public. The 2016 Ipsos MORI Veracity Index confirmed that doctors and nurses are the most trusted profession in Britain, with over 90% of people trusting medical practitioners to tell the truth – compared to just 24% for journalists and 15% for politicians. If healthcare professionals are able to get behind responsible sharing of data, they will be the best people to explain the benefits to their patients. Clinicians have a crucial role to strike the balance between protecting privacy while sharing information to improve the health of patients and the population. 

Please do get in touch if you would like to find out more. We look forward to working with you to ensure the NHS can make better use of patient data.

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Greg   28/03/2017 at 13:07

Using the correct words will just throw up a load more terms people won't understand. Data is either anonymous or identifiable. You c an have differing degrees of either, but the NHS should stop calling data anonymous if it is not anonymous. Pseudonymised data is not anonymous. You can have different degrees of identifiabilty, such as only computers can identify an individual, or such as when a human being can identify an individual. Then you have differing degrees of human - such as one owing a duty of confidence, and another that doesn't. A human who has a direct relationship with a patient, an another that doesn't. Here's a radical idea - why not just ask patients for consent? would have been up and running for about 5 years now, and countless lives would have been saved if we'd simply asked consent to share people's data.

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