RECORDS,DOCUMENTS & DATA
Online access to health records, which will be handled overwhelmingly by individual trusts and IT suppliers, needs a set of national information governance standards to ensure the data is safe, transferable and useful. NHE looks at the proposed creation of a new body to develop those standards and certify products as compliant, and speaks to National Voices chief executive Jeremy Taylor about the broader issues surrounding access and governance.
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whole host of medical and patient bodies have now endorsed plans for a Professional Record Standards Development Body (PRSDB), as a way of ensuring that information contained in electronic health records is “safe, coherent, transferable and retrievable throughout the health service and, where appropriate, across the wider care sectors”.
The creation of the multi-profession PRSDB, under the auspices of the Academy of Medical Royal Colleges, was the key recommendation of a joint working group established by the Department of Health in 2010 which has just reported back.
Charles Gutteridge, national clinical director at the Department of Health Informatics Directorate (DHID) clinical division, who chaired the working group, said it will be a “professionally led independent authority which will assure national professional clinical and professional record standards” and will be “a vital step towards the creation of digital records that can be used by patients and shared with clinicians”.
Patient organisation National Voices sat on the joint working group, while its chief executive Jeremy Taylor also contributed to the linked work done by the NHS Future Forum on the topic of access to health data.
Democratising healthcare
NHE asked Taylor whether the patients his organisation speaks for actually want access to their data, or if this debate has been taking place without them.
He said: “It’s an interesting question, because the vast generality of patients don’t demand access to their health records – this is one of those issues of latent demand, as people who do have access to their records value that hugely.
32 | national health executive Mar/Apr 12
“It’s like online banking – how often do people look through their statements, not that often, but the fact that they can do it is important. It’s a bit like that in health; having access to your record, but also then being able to do the things that go alongside that, particularly if you have electronic access – so being able to book appointments, read test results, read referral letters, read discharge summaries, get other personalised forms of information about your condition – those things are very valuable. From the evidence I’ve seen, including talking to patients who’ve had the opportunity to do this, patients value it
hugely, and it becomes a way for them to improve their relationship with the health service and their clinicians.”
He continued: “If the aim is to create a health service which is democratic and built around shared decision making rather than a health service which is paternalist where experts in white coats just tell you what’s wrong with you and what to do, then it’s one of the lynchpins of creating that different culture. It’s not an end in itself, and it’s not sufficient in itself, but it’s an important building block.”
So many standards
Jodi Sperber and Dr Eliza Shulman posted the above image to photo-sharing site
Flickr to
highlight the need for base standards for electronic health records.
They said: “An example of why interoperability is as important as the electronic health record itself.
“The story behind this photo: This is a printout of a patient’s medical record, sent from one office to another as the patient was changing primary care providers. An EHR was in place in both offices. Ad- ditionally, the EHR in both offices was created by the same vendor (a major vendor); each health or- ganization had a customized version. Without base standards the systems are incompatible.
“Instead, the printouts had to be scanned into the new record, making them less searchable and less useful. Note that this was not the entirety of the patient’s medical record…Just the first batch re- ceived.”
Many bodies have been working on information governance in recent years, including the National Information Governance Board for Health and Social Care, the DH itself and the various royal colleges, while health informatics more widely is awash with standards bodies that have so far not achieved what the supporters of PRSDB say that it will.
The working group report notes: “Technical standards alone do not ensure the ability for information systems to transfer interpretable health data around the NHS so that they can be reliably manipulated and understood. However this problem can be considerably simplified by the clinical/health/social care professions agreeing on standard clinical/professional representations for the content of medical/ health/social care records.”
The first consensus-based and evidence- based record standards were endorsed by the whole medical profession in 2008, while general practice has had Good Prac- tice Guidelines around electronic records for many years – indeed, version 4 of those guidelines was released in March 2011.
However, the model for the PRSDB
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