Exploring issues around our personal health data

3 Apr

by Cara Afzal, Vice-Chair of the GM PSTRC Research User Group and Matthew Sullivan, member of the GM PSTRC Research User Group Image

The Interface and Informatics theme cuts across all of the GM PSTRC research themes and is focused on developing information systems to allow access to and use of routine healthcare data. What does this mean – well it means that researchers, health professionals and other interested parties would like to look at our routine patient data to improve our care. Yet, public confidence in electronic patient records is at a low ebb. Stories in the press about international security services routinely harvesting data from internet and email traffic, stolen laptops, lost memory sticks and cyber-criminal hackers all fuel fears over what might happen to our healthcare data. Against this background, in February this year, the roll-out of care.data, the scheme to unify GP records with the Health and Social Care Information Centre (HSCIC), was delayed by at least six months. This seems to have been due to concerns from some GP and patient groups over security and privacy. If you have ever been in a hospital you may recall sitting through consultations and reeling off information about medications being taken, procedures completed, last time you/your loved one saw the GP etc and thinking how easy would be if clinical staff could just look at the patient record and get the information needed, without relying on us, the patient and/or carer to recall all of the information. Also, patient safety might be helped by allowing hospital data (Secondary care) and GP data (Primary care) information sources to be linked and accessible to staff involved in the delivery of our care. We enter into this debate with an open mind, if data access can improve patient care and save the NHS money then we need evidence to demonstrate this, which should reassure us, at least, that the benefits far outweigh the risks, but this evidence cannot be collected if access is not given. Some of us may recall that the NHS Connecting for Health Programme – designed to have a single patient record, accessible to the public – didn’t work and a lot of public money was wasted. As members of the user group we are asking ourselves how can the Interface and Information theme and the RUG gather evidence to evaluate the case for the introduction of care.data? There are two levels at which our work might be relevant.

  1. The first level for the I&I theme is the overall research project which is looking at some of the mechanics of combining records and building prescription alerting tools for GPs and primary care providers. However, in this blog we are introducing a second level:
  1. Understanding and addressing factors that affect individual patient confidence.
    1. The RUG I&I group have initiated two projects jointly with HeRC (Health e-Research Centre) that have different time scales. The first of these is a project to involve groups of the public in the use of mobile/wearable technology to monitor wellness indicators such as activity. The aim is to find what barriers to wearing these sensors might be and to see if this can be improved through personalization of the kit. This might seem somewhat removed from care.data, but it will enable us to explore issues around what data is and how we feel about sharing it when we have more ownership of its collection.
    2. The second project has a longer time scale and will look in more detail at patient involvement in access to their electronic records. Again, this could show how we might break down some barriers to sharing data.

We believe that access to patient data will continue to be a contentious area, until more work is done in engaging directly with the public on such issues. If we think back to when people were debating whether or not online banking was a good thing and now it’s become the norm – lessons can be learnt. It would be better if the debate for access to patient data is driven from the patients themselves and the public given a clearer stake in the decision making process for access to their data and a stronger case needs to be made for how such access will benefit patient care and importantly who will have access. It could be that the NHS considers limiting access to NHS and its affiliated organizations as a first stage and uses this learning to demonstrate benefit and consider the merits of allowing others to have access. Across all themes, the RUG can build patient trust through demonstrating improvement of safety in primary care and by collecting and explaining evidence for the benefits of sharing data

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