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Harry Cayton, Department of Health, UK

by Lloyd Davis

Background: Harry Cayton is National Director for Patients and the Public at the Department of Health where he advises Ministers, senior officials and the NHS on involving patients, improving their experience and building a patient-centred health service.

Theme: Creating Electronic Patient Records in England

My theme is “the space between people and technology” We’re not really engaged in a technologoical exercise it’s sociological trying to change relationships between clinicians and each other and between clinicians and patients as well as parts of the NHS.

Why do we need to make the changes? Healthcare is much more complex technically, medically and organisationally and paper based systems fail to meet our needs. Patients are increasingly mobile and receiv care from a greater variety of professionals and people want a greater involvement in their care.

Paper has problems - it is inadequate because we lose information, people have to replicate info, case notes are unavailable and people are put at risk becaue of unreliable communications including the Royal Mail. People often claim that paper systems don’t crash - this is not true either (shows picture of paper filing cabinet system that has collapsed)

What we trying to achieve is a health system supported by electronics giving people more choice and control, designed around them with better access to information and therefore delivering better patient care.

People think of the NHS as a single simple system - in fact it’s a number of providers and commissioners bound together by policies and frameworks - it’s not a monolithic system, it’s a very difficult system to manage and control. Information systems and electronic records offer the opportunity to make things easier.

We already have elements of the key components

Secure communications;
Choose and book (patient appointment booking system);
Electronic transfer of prescriptions;
Picture imaging;
Electronic Patient Records ;
Summary records;

Care Records service pilots are starting this month - currently we cover medications, allergies and adverse reactions. We’ve already registered more than 300,000 staff including 42,000 GPs

The summary care record is a small subset of particular use to paramedics who spend most of their time visiting frail old person feeling faint, or having a fall and their relatives call an ambulance saying they’ve had “a funny turn”. Now, this isn’t much information, so electronic access to the summary record is going to have an enormous benefit in keeping people away from hospital.

Choose and book lets people 16,000 bookings a day although there are teething problems.

Electronic transfer of prescriptions - 15.2m transmitted so far - 121,000 a day. Now we’re introducing a choice of pharmacist where you wish to pick up the medicine.

Imaging - we are getting rid of x-ray film, so now we don’t lose x-rays and people can be more involved in their care by looking in more detail at what’s going on with them.

Healthspace - patients as individuals can view and review their electronic records - represents an essential power shift to the individual from clinicians.

Public acceptance is enormously important - we involve people in decision making about protecting confidentiality and security of patient records.

We’re still struggling with some issues:

Security access controls - smartcard and audit trails
Children - working out the rules, particularly in the transition from child to young adult.
Social care - working out the rules for sharing data across agencies
Research - Research community want access to these huge data sets putting pressure on public confidence in confidentiality.

In summary, why do we have to do this?

We have an aging population living into 80s and 90s and those people have more and more multiple conditions - neurological diseases will increasingly be cause of morbidity and therefore a major demand on healthcare. So we need to get e-healthcare working to help people stay safer and more well in their own homes - we’re doing it for our parents and grandparents, but also as an investment for our children - the technologies that will affect their healthcare and we need to be putting foundations in place.

But we don’t have all the answers, we have to let people use the technology and see what they do with it, the history of the development of technology is dependent on users not providers.

So we have to recognise this is a social exercise not a technological one.

Q: £12m spent to date, how much more before we see it working?
A: Ummm… more like 12bn - well we’re already enabled, if you took it away we’d fall apart- it may not be helping *all* clinicians and patients, but we’re moving that way. You can’t just turn these things on and expect them to be perfect.

Q: what advice would you give to other countries embarking on such a programme?
A: Engage with clinicians who are sceptics as well as enthusiasts - we didn’t do this so well. utility is also very important - successful systems are driven by user satisfaction. interesting lessons too from the US - bundle the things that doctors really want with the things they don’t want. so the gp payment system has been implemented completely without a hitch - perhaps we should have bundled choose and book with it :)

Q: You’ve attracted negative publicity, do you think this is inevitable?
A: Well, we have a history of failing at big IT projects - our ambition is certainly vast and the media in the uK are relentless in their scrutiny of public activity - especially when it’s seen to be failing. I came to this 3 years ago and I’ve become much more enthusiastic because of the benefit to patients - it is complicated and I think a more incremental approach would be appropriate. Also I think it’s worth looking at how do you bring legacy systems together rather than always starting from scratch.

Q: Do you think that ownership by the state and not patients is a barrier?
A: Strictly speaking these records are owned by the Secretary of State for Health. It would be nice though if people owned it themself. We do have opt-out on sharing of the record, but we don’t allow opt out of having an electronic record any more than banks allow an opt-out from them using electronic systems to manage your money.

Q: How do you motivate hospital groups and doctors
A: Well, money is a great motivator - we’re seeing benefits from payment by results - choose and book users will have a market advantage. I’d like to see something like Amazon.com - “Patients like you also chose these hospitals…” and so people get to make a real choice based on what real patients have said about them.

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