Consultation on use of records

Tags: DH

02 Dec 2009

The Department of Health is to launch a series of pilots to examine how patients can opt out of having their records viewed for research purposes after its consultation found a wide gap between the views of researchers and the public.

This week the DH published the results of its consultation on wider use of patient information which ran last year to look at who should have access to data, what purposes it should be used for apart from direct patient care, who should control access and what consent options there should be for patients.

The report found that just over half the general public (53%) and a slightly smaller percentage of patients (46%) thought that identifiable data should never be used for research purposes without consent while only about one in ten researchers (11%) thought this.

Three-quarters of researchers (75%) thought it was acceptable for data from ‘sealed envelopes’ to be used for additional purposes if anonymised without the need for consent but only one in three of the public (30%) and 25% of patients agreed.

Around a quarter of patients (22%) and the public (26%) thought anonymised data from ‘sealed envelopes’ should never be used. Only a very small proportion of researchers (3%) held this view.

The DH commented: “It is clear that the public expects their consent to be sought if the data used is identifiable. This means that we need to test out how best to secure that consent and properly inform patients about the use of their identifiable medical records.”

The DH said it planned to set up a number of pilots in Hampshire, the Isle of Wight, Birmingham and Nottingham to explore means of patients opting out of having their records viewed for research purposes. It said it would report back on testing and offer a preferred mechanism by June 2010.

The consultation included a survey, 12 regional stakeholder events, group meetings and interviews with “seldom-heard” groups such as young people, recent immigrants and people with learning disabilities and consultation material was sent to more than 250 stakeholder groups. The consultation generated 1598 written responses and 22 letters from members of the public.

The report on the consultation states that “for most questions there was a significant difference between the responses of patients and the public on the one hand and researchers on the other.”

Fewer than one in ten members of the public (7%) and patients (85) thought researchers ought to be able to search records without Patient Information Advisory Group approval while almost one in three researchers (29%) thought it was acceptable.

The idea of using an “information custodian” to oversee the use of patient data was backed by71% of researchers, 59% of patients and 56% of the public. About six in ten researchers (60%), NHS respondents (61%) and patients (56%) thought it was a good idea to put flags on patients’ records to indicate that a patient is willing to be conducted directly by researchers compared to 44% of the public.

The DH said the findings highlighted areas where more needed to be done to give the public confidence in the use of their data for research purposes.

Related articles

SUS public consultation launched

Consent to view explored for detailed records (23 Sep 2008) (6)
DH seeks tougher sanctions for security breaches (29 Feb 2008) (5)
Government rejects consent call for SUS use (14 Nov 2007) (5)
Confusion surrounds Summary Care Record (14 Sep 2007) (2)
Call for electronic consent for secondary uses (30 Aug 2007)

Reader's Comments

Careful what you wish for

03 Dec 09 18:12

I note in the questionnaire that the public were not asked to consider who might pay for the Information Custodian, and all the other bureaucracy that likely revolves around this.

Although they seem to have gone around the houses in terms of involving groups in this, and explained it pretty well, the fact is that groups of even quite clever people will struggle to understand this even with coaching. Just like there are trials without jury for complex things, we have to be aware that it is dangerous to ask them for ballots on things like capital punishment.

Some of you will think that this is real anti-liberty position, but we all know in IM&T that anonymized data is not going to harm anyone, and the agreement of these daft principles will potentially cripple research. I for one expect clever people to make these decisions for me, and do not expect to be asked if for example the country is thinking of moving from seizmic to satellite early warning systems which one they should use.

If at first you don't suceed, try try and try again..

maryhawking@tigers.demon.co.uk

04 Dec 09 20:12

"The DH commented: “It is clear that the public expects their consent to be sought if the data used is identifiable. This means that we need to test out how best to secure that consent and properly inform patients about the use of their identifiable medical records.”"

This implies that if the public (and patients - are these mutually exclusive groups? -) had understood the position, DH would not have had the problem of "properly informing" patients. **or** that, as the patients have understood the issues and still disagreed with DH and researchers views, the major concern of the DH should be to "secure that consent".

Given that the consultation produced such a clear difference between the two sides - patients/public and researchers - isn't it time for a "back to te drawing board" rather than a "how to convince the dissidents that we are right - whatever you think" approach?

PS I'm a GP: my patients are reasonable, rational people with a clear grasp of the issues when outlined in plain English. I trust their judgement in issues such as this.