RECORDS, DOCUMENTS & DATA
is the USA’s CCHIT, the Certifi cation Commission for Health Information Technology, which has proved successful in getting the health IT industry on board, with over 200 EHR products certifi ed by mid-2009, 75% of the marketplace.
Where there’s a will
Taylor said he was “reasonably confi dent” 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 diffi cult 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 suffi cient 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 “time- limited 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 diffi cult 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 confi dential 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 confi dentiality 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 confi dential 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 suffi cient condition for shared decision- making. It’s a building block for a revolution.”
Jeremy Taylor
FOR MORE INFORMATION The report of the joint working group is at:
tinyurl.com/medical-records-body-jwg
national health executive Mar/Apr 12 | 33
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