interviews

'A building block for a revolution'

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.

A 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.

“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

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 evidencebased record standards were endorsed by the whole medical profession in 2008, while general practice has had Good Practice Guidelines around electronic records for many years – indeed, version 4 of those guidelines was released in March 2011.

However, the model for the PRSDB is the USA’s CCHIT, the Certification Commission for Health Information Technology, which has proved successful in getting the health IT industry on board, with over 200 EHR products certified by mid-2009, 75% of the marketplace.

Where there’s a will

Taylor said he was “reasonably confident” that the PRSDB will be set up and work as intended, because of the number of people from across the sector committed to that goal.

He said: “If you’re not going to have one IT system, which is no longer the way things are done, you have to have some standards for what goes into records, and you have to have standards for how they get shared.

“It’s technical and difficult work, but it has to be done, and it comes down to whether there’s a will to do it. I think there is a sufficient will.”

Access for all

One issue is digital access, with older people – who are far more likely to have contact with the NHS and social care – less likely to use the internet and digital communication than the wider population, even though they stand to potentially gain most from access to their health records. Taylor said he is certain this is a “timelimited problem” and that within 10 to 20 years, digital communications take-up will be truly universal.

He added: “As for right now, one of the themes in the Future Forum report was that it’s not just about technology: it’s about attitude. There’s no point having fantastic whizzy kit if it’s used by people whose mindset is that ‘we don’t share’, ‘we don’t communicate’. There is nothing to stop doctors now writing a referral letter and handing it to the patient. There is nothing to stop discharge summaries being handed to patients in hard copy form.

“There are some people who live in terrible social isolation, and that is a really difficult problem, but most people who don’t have access to the internet have a family member who does, so there are workarounds. There’s nothing wrong with a handheld record. Maternity is a very good example of that. Handheld records have been used for donkeys’ years and they’re valued by mothers and midwives.”

Who sees what

Despite the many advantages of sharing patient data between health and care professionals, there are clear problems around data protection, due to the highly confidential and sensitive nature of patient data. Patients’ organisations need to be involved in the oversight of the creation of the new standards, Taylor said.

He explained: “We should be involved, we are involved: I’m involved personally, via the work that Fiona Caldicott has been asked to do around information governance, to review the way those rules are used in practice. It won’t just be me, but me as a conduit to a wider range of patient group opinion.

“What patient groups say is that transparency is important: ‘it’s my data’, people have a right to have access to their own data. And not just access: they have a right to be co-producers of it. Part of the work on record content and structure is that a good health record is not just a list of things done to me, it’s also ideally a place where I can record my preferences, reviews about my own medical history, my care plan, and so on.

“Patient organisations also say it’s really important that there is confidentiality and protection around access to third party data.

“One of the trickiest areas is domestic violence; ensuring that women who have access to their health records don’t then come under duress to share their information with their abusive partners. All these issues have already been dealt with to some extent, but they do need to be addressed. I have a right to see the data about me, but not to see data about other people. If a record contains information about me and other people that has to be handled carefully; how you redact things, how doctors deal with confidential information they wish they hadn’t heard but have heard, so they have to do something with it. There are some very tricky information governance issues, but the way forward is to have a conversation about how you work through them, not to say it’s all terribly complicated therefore it’s easier not to share anything.”

Sharing sensibly

He noted that Dr Amir Hannan, the Hyde GP, is “absolutely passionate” and even a “zealot” for letting patients access their data, but that he was also a stickler for proper governance. Taylor said: “He doesn’t just open it up to everybody, he explains to people the consequences of having access to their records, and goes through a process of assuring himself as a professional that people are aware that they may see things in their report about themselves which could cause anxiety or upset and they have to be aware of that.

“So, the most zealous person I’ve seen about records access is himself a stickler for informed consent and governance around information access – and, as he would say, access is only the beginning of the process. It’s not enough to have access alone, that doesn’t change anything.

“It’s a tool for re-engineering the relationship patients have with their professionals and the health service, and the real value comes in all the stuff that goes alongside it; there’s a kind of moral case for saying ‘I have a right to see my record’, an unanswerable case, but having that in itself doesn’t change anything.

“That’s why access to health records is a necessary but not sufficient condition for shared decisionmaking. It’s a building block for a revolution.”

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