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NIHR Greater Manchester PSTRC Meet the Team – Paolo Fraccaro

10 Apr

The sixth in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Paolo Fraccaro, Research Associate and former NIHR Greater Manchester PSTRC PhD student

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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, 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 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, 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

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.