The Scottish Consumer Council is pressing for more information to be distributed to patients about the way their electronic health records will be shared, saying that the NHS needs to pay greater attention to patients’ views on the matter.
Its report, ‘Health Online: Public Attitudes to Data Sharing in the NHS’, recommends that every home in Scotland should receive information describing the Emergency Care Summary (ECS), an edited version of the proposed single health record accessible to emergency staff. It says that information sent to the public should set out clearly the way records will be shared, and to make it as straightforward as possible for patients to opt out.
A spokesperson for the SCC told E-Health Insider that the survey had been commissioned and undertaken by the organisation because they were concerned that plans were being pushed through without consultation with patients.
Despite some questions, respondents were generally enthusiastic about the plan – especially about the idea of the ECS. A spokesperson said: "When people do find out about it, they are then supportive of it."
The report also recommended the introduction of a Scottish version of the English health IT programme’s Care Record Guarantee, in order to set out the rights and responsibilities of patients and the NHS.
Eight focus groups were consulted about the plans, six drawn from different sections of Scottish society, one with experience of mental illness and one with HIV.
Security concerns were important to many respondents. One group member commented on anybody who breaches patient confidentiality: "Take them out and shoot them."
Around half of the people interviewed said they would be interested in seeing the ECS themselves, and half described themselves as "not really interested".
However, the ECS was seen as a good thing, as long as the option was there to opt-out. Most respondents said that A&E staff, NHS 24 and paramedics should have access to it, although fewer believed this should be extended to community pharmacists.
Graeme Millar, chair of the SCC, said: "Technological change has huge potential for the NHS and making better use of information technology can transform the way services are provides. However, the idea of sensitive personal information being stored on computers is scary for many of us."
Many people don’t feel involved the project, explained Millar, adding: "The clear message is that the NHS in Scotland needs to pay greater attention to informing and involving members of the public in the move toward a single electronic health record in Scotland."
Links
Related document
‘Health Online: Public Attitudes to Data Sharing in the NHS’ [PDF]