Criticism of the government’s plan to collect data from patients’ medical records to build a new NHS database—care.data—has been fast and furious. With data collection postponed amid public concern about its confidentiality the government is now fielding advice on how to get its “busted” scheme right next time round.
While the research potential of analysing “big data” has not been questioned, comment has been made on the government’s priorities. “Why has the NHS has moved so quickly to provide patient records to third parties and so slowly to provide data to the patients themselves?” This question, posed last week by Mohammad Al Ubaydli, founder of PatientsKnowBest, is a good one.
In 2013 the government trumpeted its pledge to provide patients who wanted it with full access to their GP records by 2015. The pledge made sense. Providing patients with full access to their medical information and test results, and fostering two way communication with their health professionals online, engages and empowers them, increases their health literacy, promotes partnership, can reduce heath professional’s workloads, and improves patient satisfaction and health outcomes.
It is therefore disappointing that the government has now watered down its commitment on patient access to records. All patients are now being guaranteed by 2015 is access to information in the summary care record with full access restricted to prospective data collection.
Is this really in the best interests of patients? Particularly those with long histories and complex disorders who tend to be seen by many different health professionals, some of whom struggle and fail to get on top of their history and problems in short consultations. It would seem that the benefits of empowering patients through giving them full access to their information have been trumped by doctors concerns about the downsides of doing this, such as the time it may take to deal with patients who spot errors (a good thing), are baffled by medical terminology, and upset by unsuspected “gremlins” in the notes.
But are these concerns overplayed? Experience in the US from the Open Notes initiative, which looked at the impact of letting patients see everything that is recorded in their medical notes, suggests that the benefits outweigh the concerns and there has been scant impact on doctor’s workloads. There is also evidence that once patients and doctors go down this route most prefer it. (New Eng J Med 2014;370:6-8)
Patient distrust and disillusionment over who gets to see their health data has been rising. So is demand by patients for full access to their health information. Patients may not be storming the barricades, but their frustrations and fears about access to their health information should prompt further debate. Much has been made of the potential benefits to health research of being able to analyse big data sets, but less on what individuals stand to gain by access to their own health information. Nor is there yet sufficient attention being paid to the value of the parallel mines of information patients share among themselves. In an eloquent video clip, Paul Wicks of Patients Like Me, makes a compelling case for reaping the benefits of both data sets. “Let’s collect national data,” he says, “but let’s also link it to the data that e-patients are generating for themselves.”
Tessa Richards is senior editor/patient partnership, BMJ.