Look Who’s Looking at my Data Now

5 Feb

by Richard Williams, Research Fellow for the Interface and Informatics theme Image Sneaky woman picture by CALI is licenced under CC It was announced recently that patient data is to be collected from GP practices, combined with hospital data, and stored by the NHS Health and Social Care Information Centre (HSCiC).  This anonymised data will then be made available to researchers, potentially leading to an improved quality of health care for patients. This is excellent news, as it is widely believed that one of the main sources of patient safety issues is at the boundary between primary and secondary care.  For all the technology available, a hospital worker will still find it hard if not impossible to access a patient’s health record, including their pre-existing conditions, current medications and allergies.  Analysis of the consolidated data will find the main issues, which in turn will lead to changes in policy or new systems to address the problems. And yet it could have been so much better… The NHS Connecting for Health programme aimed to build a single patient record database accessible to the patients themselves, and all healthcare professionals involved in their care.  It would have allowed for much more joined-up thinking between GPs and hospitals, leading to better patient care and fewer safety issues.  It didn’t work – as pointed out by this press release.  However when it was discontinued in March 2013, its remaining responsibilities were taken over by the HSCiC, and this announcement must be seen as one of the positives from the programme. I can understand why the data is anonymised because you need to persuade people that their personal information is kept safe, however it becomes a problem when people using the data identify patients who are at risk and there is then no way to communicate this information back to that patient’s GP.  Future policy can be changed, but it doesn’t help the at risk patients who have been detected. Salford already has a dataset combining GP and hospital data and the university has been using it for some time now.  It’s a brilliant and unique resource and although the data we receive is anonymous, the people who hold the data have a link back to the patient’s NHS number.  If a patient safety issue is identified, although we as researchers can’t identify the patient, the patient’s GP could.  This enables us to perform research to direct future policy, while at the same time identifying patients who are at risk now. Anonymous datasets are a useful tool, but to perform real-time patient safety monitoring the link back to the patient needs to be maintained.

One Response to “Look Who’s Looking at my Data Now”

  1. Gavin February 8, 2014 at 11:58 am #

    Hi Richard,

    A few comments on care data.

    Firstly, the data is not “anonymised” (unless one opts out), as is clear from the charge sheet for access to the HSCIC dataset, which refers to “bespoke extract containing personal confidential data”:

    http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

    Secondly, whilst we might agree that there could be some value for research purposes in collecting this information, the implementation of it has been absolutely shambolic. I have not personally received one of the much publicised leaflets through my letterbox yet.

    I would also stress that in the context of a research centre that prides itself in patient and public involvement in our activities, such involvement has seemingly been completely absent from the care data initiative. The EMIS user group has argued that:

    “The “doctor knows best” attitude emanating from NHS England at present is reminiscent of the worst paternalistic medical attitudes of previous generations; the informaticians must catch up with clinical practice in terms of engagement and shared decision making with patients over the sharing of their personal information.”

    http://www.emisnug.org.uk/article/caredata-update-january-2014

    Without wishing to appear “anti-“, negative or troublesome (although I would note that I have personally opted out of care data), for me the main issue here is one of informed consent. As researchers, we have to go to inordinate lengths to ensure that our research is ethical and consistent with ICH Good Clinical Practice. However, on the face of it, it would appear as though the leaflet (which I have not received) was not even put before an ethics committee.

    So, what can be done in order to correct the concerns that I and others have with regard to this initiative so that researchers can get the data in order to inform public health research and policy?

    Both the piece by EMIS, and a recent letter to the BMJ from a group of authors, including Caroline Sanders from our own Centre for Primary Care (paywall – http://www.bmj.com/content/348/bmj.g1294) point to a potential model whereby patients can choose which research projects or initiatives they want to opt in or out of, in a “dynamic way.” Such a model of informed consent might also be attached to a system whereby patients have access to their own records, or access to whatever information is being sold to third parties.

    The possible downsides of this kind of big data harvesting and sharing are outlined in a recent piece by Asher Wolf on wired.co.uk:

    http://www.wired.co.uk/news/archive/2014-02/04/care-data-nhs-healthcare

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