CRDB conference stokes debate on patient awareness

“I think we have a job on our hands," observed the chair of the National Programme for IT’s Care Records Development Board (CRDB), surveying a straw poll that indicated 88% of the audience at the board’s first conference felt patients’ rights to opt out of the new care record system had not been clearly explained.

Harry Cayton, the Department of Health’s patient czar who is also chairing the new board, was leading a discussion and electronic polling at conference. He recognised that if the reasonably well-informed group at the conference felt baffled by opting out and other aspects of patient control over data, there was a lot to do.

Later at a press conference, Marlene Winfield, head of public engagement for the national programme, put the record straight on opting out. “People can opt out of their data being shared.  They can’t opt out of their data being electronically stored," she said.

Clinicians cannot opt out of recording information, by law, but they do require a patient’s consent to pass that information to other parties involved in an individual’s care, it was explained.

Cayton said that the national programme was committed to patients being able to opt out of the electronic record if they wished to do so – and to control parts of their information if they wished.

The daunting business of getting these complex messages over will be the subject of a public campaign starting next year. Winfield explained that the aim will be to get information to every patient several months before their record goes live on the spine.

Locally-based campaigns supported by centrally produced material will be mounted to ensure the public knows what is happening and has a chance to think about the issues. Cayton said GPs would be major sources of information but he foresaw that many other members of the primary care team – receptionists, practice nurses and so on – getting involved.  It was a responsibility for the NHS as a whole, he said.

Sharing information was a common theme for the day.  Alan Burns, the national programme’s new director of service implementation, spoke about the “many new and wicked questions" the system designers faced.

“Wicked questions are those for which there is no right answer.  There may be a best answer," he explained.

For example, he asked, what is the right level of information sharing between health and social care?  What is the right level of information sharing between the agencies working with children?

Burns said he had even been asked recently: “What should we do about genetic epidemiology?"

It was important that the CRDB found ways to answer these questions, he said.

A key component of finding answers will be consultation with stakeholders via the network set up by the board. All individuals and groups can register to be part of the stakeholder network, regardless of whether they are a small local patients’group or an ancient royal college. All institutions with an obvious connection to the national programme have been invited to join and to nominate a link person for communications.

Cayton’s personal view, after years of testing out different methods of engagement, is that this type of system should be the replacement for the traditional representative committee.

The event was good-humoured. Eighty per cent of the 350-strong audience declared that they supported the national programme, though only 44% knew a lot about it.  Proceedings started with a clip from Bremner, Bird and Fortune’s recent satirical sketch about the national programme and there were jokes shared among the audience about the keypads for voting being like those on the quiz show, ‘Who Wants to be a Millionaire?’