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Patient data must be 'kept safe' under new scheme, warns RCN


Nursing leaders have stressed the need to ensure patient data is safe and secure, following the publication of a report on the government’s controversial programme.

The major IT programme will enable GP records to be shared to aid health research, but the government was forced to put it on hold because of concerns about how the information would be used and a lack of consultation with the public.

“Many people still have deep concerns about the programme”

Katherine Murphy

An inquiry by the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care, which is hosted by the Patients Association, has agreed the public was not adequately consulted in the early stages of the scheme.

However, the group found broad support for the principle of sharing health data to help improve services and patient care.

“Evidence taken from a cross-section of healthcare charities, royal colleges, the research community and NHS England all points to strong support for medical data sharing in theory,” said Katherine Murphy, chief executive of the Patients Association.

Patients Association

Katherine Murphy

“Patients and the public are broadly supportive of the principle of using health data for research that is in the public interest. However, many people still have deep concerns about the programme and are worried about how their personal data will be used,” she said.

The group said the government was right to pause the scheme to allow for more consultation and for other issues to be resolved.

Some called for a scheme where patients would have to “opt in” for their data to be used but the inquiry concluded an opt-out system was necessary to ensure enough data to make the exercise worthwhile.

The Royal College of Nursing was among organisations that backed an opt-out system, as long as it was communicated clearly to the public.

“Many nursing professionals see the benefits of sharing more data in the health service”

Peter Carter

RCN chief executive and general secretary Peter Carter said nurses understood the benefits of sharing information.

“It provides extremely valuable evidence for better understanding patients’ health needs and for planning care services,” he said.“

Many nursing professionals see the benefits of sharing more data in the health service,” he said. “Community nurses visiting patients at home would find it useful to be able to see the patient’s hospital and GP records so they received the most appropriate and personalised care.”

Royal College of Nursing

Peter Carter

He said there was a strong case for using patient data for research, but added: “It’s crucial this data is handled properly and kept safe. Many patients have entirely understandable concerns that this hasn’t been happening.”

The programme is now set to be rolled out in stages to ensure patients know what is going on, how to opt out, and so the scheme can be tweaked along the way.


Readers' comments (3)

  • Pussy

    Oh Peter Carter is always saying this n that but what does he do apart from shout? Very little as far as I can see. I think it's safe to say patient data will NOT be safe and let's be honest how could it be considering the state of NHS IT?

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  • Research is only the start. Sharing patient data for the right purposes is critical to integrated care - especially with an increasing number of provider organisations. What we must avoid is hypocrisy - asking for permission to share information for unspecified 'research' purposes and then interpreting this permission in ways that the subjects do not expect or understand. We are all accustomed to IT applications asking for permission to use our personal data for reasons that are so broadly written there is no effective control. This is usually accompanied by contract terms that no-one with a life has time to read. The government must make requests for the use of information to be specific enough for data subjects to feel that we have a genuine say in how our data is used. How about a standard form of contract for data use that everyone can understand, needing only variations to be highlighted? That is not a new concept. Everyone is running scared of the data sharing problem - common sense, good planning and informed discussions with patients and public is needed. Paranoia will continue but that should not block us from making sensible progress where we can. We must earn the trust of the public and that will only be achieved by being honest and open about risks and advantages. A prerequisite of course will be good information governance provisions, required contractually.... and who is addressing that right now?

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  • In the advent of Big Data, patient data on any IT system will never be safe. everybody now has an online profile, some more detailed and shocking than others depending on what information one may unwittingly have passed on. the days of privacy protection are almost over and those of us who fiercely try to defend its release and spread are sadly fighting a losing battle.


    'Big Data: A Revolution That Will Transform How We Live, Work, and Think'
    Paperback – March 4, 2014
    by Viktor Mayer-Schönberger (Author), Kenneth Cukier

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