One in five could object to SUS data use

30 Sep 2008

One in five people in England may have objections to proposals for the Secondary Uses Service because of moral and ethical concerns over the use of their data, Catholic bishops have warned.

The Catholics Bishops Conference says that the proposed consent model for the SUS, which means patients would not give explicit consent for their information to be included in the service, needs further work.

A spokesperson for the Conference said: “The issue is that if patient’s consent is not required it may mean that people’s data is used to enable research that people have ethical or moral objections to.

“Catholics make up 8% of the population and with Muslims and Jews there could be up to a fifth of the population that feels this is morally objectionable.”

The spokesperson said the Catholic Bishops Conference did not necessarily believe explicit consent would be necessary in every case.

He added: “We don’t want to hold things up and to get explicit consent in all cases would be cumbersome but we need to find some workable alternatives. There are examples of other countries that have hybrid systems for consent on research.”

The use of patient information by the SUS is currently out for consultation. The Conference spokesperson added: “We feel that this has been slightly bounced into consultation and that it has all been done rather in haste.”

The Conference is currently responding in detail to the SUS consultation which closes on 10 December. The spokesperson said the Conference would be happy to work with other faith groups to try and find a solution.

Fiona Barr

Readers Comments

Catholic Bishops?

01 Oct 08 08:58

Is someone going to rush in and declare "I didn't expect a Spanish Inquisition!!!"

This surely has all the overtones of a Monty Python Sketch. I fail to see the relevance of the issue -perhaps E-Health Insider could amplify it?

Fetch the comfy chair...

Lyn Whitfield, managing editor of E-Health Insider says: a body representing a substantial group of people who might be expected to have reservations about a major, national IT programme says that they do, indeed, have reservations and will use a widely publicised consultation to push for changes. We thought that might have some relevance to IT and information use in the NHS.

Catholic bishops?....

01 Oct 08 10:14

It is this type of instant dismissal of people's concerns that could prove the downfall of these projects.

As a patient, you're not entitled to a view if you want to protect your own information from the prying eyes of mandarins and unelected egotists.

As a patient, you're now not entitled to protect your data if you may have fears over its use in research that violates your conscience.

In each case, you are branded as a member of the lunatic fringe.

To all those in charge of these projects...beware! Your arrogance and frantic dismissals may turn and bite you in the future.

You would be better served by embracing comments from different stakeholder perceptions rather than desperate denouncements of the position.

The sooner you get this point the sooner we may all end up with a product and project we can accept and move forward with.

Relevance

01 Oct 08 10:28

The relevance is straightforward. It's not rocket science.

CfH will not ask for consent to use identifiable data from the SUS database. That data pool will be massively increased once uploads to the summary care record and detailed care record occur.

People may or may not be happy to have their information uploaded for "clinical" purposes, but once uploaded they will have no control over how their information is subsequently used for research or other studies, or passed to other third party organisations (e.g. pharmaceutical, insurance etc).

Quite rightly, people object to their data being actively used to further research into areas that they find unacceptable (and that is their right), in the same way that they would object to donating to organisations that fund such research (for example, research into abortifacients, alcohol or drug abuse, studies involving vivisection etc). Many may wish not to support large multinational pharmaceutical companies in their research - that is their right.

If you cannot object to the ways in which your uploaded data will be used/misused then you must stop your data being uploaded in the first place - that is, opt-out of the NCRS until such time (if and when) as you are happy for your data to be uploaded, made accessible and used in whatever ways the NCRS eventually results in. That is called taking control of your data.

More than religious objections...

02 Oct 08 16:23

Click Here

Should we say any more?