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Charities struggle to share care data



Combat Stress CIO says obstacles to accessing patient records hinders integration with health and social care

Many charities need to be able to share data with healthcare and social services, but face a range of obstacles in doing so, according the chief information officer of the mental health charity for military veterans.

Richard Burley, CIO of Combat Stress (pictured), said this can prevent the organisations from reaching their full potential in providing care that aligns with that from NHS organisations. It could also leave them outside the integration of health and social care that the government is aiming to achieve.

He was speaking at a discussion on healthcare IT organised by Dell, where the sharing of data between organisations in different sectors emerged as one of the main themes.

Burley said that charities such as Combat Stress would often be able to help their subjects more effectively by being able to see their NHS records. This is possible under the relevant sharing protocols, but the financial cost of access to the NHS’s N3 secure broadband network poses a major problem for many charities.

“To be connected we have to meet their standards and compliance rules, and be audited by the NHS,” he said. “For small organisations this is too expensive, and for medium sized organisations like ours, when we do the cost-benefit analysis it is too high for us right now.”

He added that even if a charity does obtain access to an electronic patient record, it is under the control of the NHS and often comes in a form that makes it difficult to add its own information.

Standard approach needed

Another issue is that charities have to negotiate with every organisation with which they want to share information, and are hindered by the lack of any standard approach to make this process easier.

“I’d like to see a functional, really pragmatic and properly documented process to facilitate document sharing between organisations. It would transform our organisation’s work so much.”

Gary Birks, director of healthcare and life sciences for Dell, said that theoretically it should be possible. He pointed out that many hospice charities are able to access the electronic patient records of local healthcare trusts, but that they have a history of working closely together.

Burley suggested that any privacy concerns could be largely resolved by giving the patient full control of the records, likening it to the way that people can access their bank accounts online and sharing specific details when needed.

“A practical step for us would be full access to the complete record for an individual patient,” he said. “If the patient can see it they can share it as they like, as with financial information.

“I would definitely push this for the NHS.”

Councils easier

He said it is often easier to share information on patients with local authorities, as their experience in sharing in sensitive areas such as child protection has given them more effective mechanisms to do so. But again he would like to see a more standardised method developed.

“Until we’ve got a mechanism for centrally storing and managing patient information so it is safely accessible to the right people we are all going to be skirting around it and very inefficient,” he said.

“We have dialogues with organisations, but it’s that leadership aspect of it that’s a bit lacking. There are so many parties at the table and we’re not sure who is going to be the leader of it. It somebody comes forward it would be a real catapult to progress.”

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