Patients should get Wikirecords

15 May 2008

The Government should create ‘Wikirecords’ - online, accessible medical records which patients can contribute to and comment on – according to a new report from think tank Demos.

The idea is one of a number of recommendations designed to reform relations between doctors and patients, and help patients to more fully engage with their treatment.

Demos says allowing patients access to their records would put them in control of the information, and let them raise any issues where they did not argee with the decisions of their health care provider.

“As patient records open up, policy makers should take inspiration from Wikipedia and allow patients to contribute to and comment on (though perhaps not edit) professional information. This will have clinical benefits while also sending the clear signal that information should be owned by and be under the control of patients,” says the report.

Demos researcher and The Talking Cure report co-author Faizal Farook said the idea of Wikirecords would be an additional functionality to the electronic patient records currently under development by the NHS National Programme for IT. Patients would be able to see the observations of doctors and consultants, and make comment, but would not be able to change them.

Farook told E-Health Insider: “It’s part of the idea of moving away from the idea that the notes are the property of the health service. Wikirecords are about taking the next step forward and giving patients the chance to have a conversation about their healthcare in a written format.”

The report said patients now have access to vast amounts of medical information and want to participate in their healthcare decisions. It said healthcare providers should embrace informed patients, rather than brand them ‘cyberchondriacs’.

Curbs on the ability to comment on records would have to be thought about in implementation, said Farook, but the idea of hypochondriacs arguing endlessly with their doctors should not be allowed to shape the idea of Wikireports.

Other recommendations include placing GP-patient relationships at the heart of the proposed NHS Constitution, and patients with chronic conditions should work with their GPs to establish ‘outcome statements’ with shared goals.

The report, The Talking Cure: Why Conversation is the Future of Healthcare, is available from the Demos website.

Links

Demos

Reader's Comments

waaaaay coooool

16 May 08 11:00

glad we have think tanks like this with their ears to the ground.

maybe we could have some web 2.0 as well.

Demos

19 May 08 14:44

I've been waiting for some Demos of Lorenzo for ages. I wonder if they could WIKI me one up?

What about Wikiing the SCR

21 May 08 10:58

Some factions of the BMA rubbish the SCR, because of its potential inaccuracy. If the patient can Wiki it, that should remove their objections, shouldn't it? I speak as a patient.

Sounds familiar

philip.wilford@rsh.nhs.uk

21 May 08 12:19

Do these people from the think tanks look on the internet often ? Sounds very much like Google Health !!

Internet - does not compute

21 May 08 15:02

Why use the Internet when

- we can pay BT far more to have a separate not very resilient network - we can create an expensive email service that for a long time needed local email accounts to set a user up (and many clinicians ignore, preferring free webmail products). - we can ignore XML and HL7v3 because the chosen suppliers appear to be so out of date.

Because, it appears, the control freaks at the centre are never up to date, and are only spending our tax money.

Having said that, I wonder how many people are happy to sign up to Google Health or others, with no Patient Records Guarantee, almost certainly targetted advertising, and most likely resale of their (only possibly anonymised) details.

And adding a patient-updatable Wiki to the skimpy details in the Summary Care Record sounds great, but will A&E doctors really find time to read the patients healthcare musings ?