Patients are positive about the government’s planned Integrated Care Records Service (ICRS), but cautious about security issues and unhappy about the idea of people outside a close circle of trusted NHS staff having access to their records.
The findings come from extensive qualitative and quantitative research conducted by independent market rearchers for the Consumers Association magazine, Health Which?, and the National Programme for IT in the NHS.
The research report says that the “only barrier was a perception that security was an issue with electronic systems.” It says that in reality patients need to be informed and reassured about security protocols and sharing routines that excluded non-clinical NHS staff and non-NHS staff.
The qualitative research which explored participants’ thoughts and feelings about electronic records found a positive attitude to the concept. One interviewee summed up feelings with the comment: “It needs sorting out. Computer records are the way forward, in principle.”
However, like other investigations, the research found that people were worried about non-essential access to medical information. Despite acknowledging that current security around paper records was poor, discussions on electronic storage brought their worries to the fore.
“Why does a receptionist need to know?” asked one focus group participant. “The one from my GP’s surgery lives in the same street as me. I’m note sure I want her to know everything about me.”
There were specific concerns about electronic formats. One participant said: “People would be able to hack into the system. No system is totally secure.”
The quantitative research, based on interviews with nearly 2000 adults, found 72% would want to know how secure the system was and 68% would like to know how the NHS made sure no one else saw their personal details.
The report says that while patients generally say they are comfortable with having their basic record shared within the NHS, they tend to adopt a narrow, traditional definition of “the NHS”. Pharmacists and opticians were not regarded automatically as people with whom information could be shared and interviewees were wary of sharing whole records with nursing homes.
Social workers were distrusted intrinsically by some participants in the qualitative research and only 9% of respondents to the quantitative research thought social services should have “some access” to records.
Patient access to records – a cherished aim of the NHS Plan – was less of an issue for the qualitative research groups. The research report notes: “Overall patients struggled to understand why they might want to access their health record. For the future they could envisage wanting to look out of interest or check that information was correct.”
The quantitative found 67% would like to know whether they could see their own record and 45% would like to know if they could correct mistakes.