Patients need access to their medical records—now

Patients, particularly those with long term conditions, have a pivotal role in managing their own health,1 but too often they are left to struggle without the tools to do the job, the most basic of which is being able to view their medical record.

Ever since electronic medical records became widely available, patients have called for the right to have continuous online access to the information in their notes. But professional resistance and policy inertia have proved difficult to overcome. Doctors have argued that patient record access would increase their workload, cause harm to some patients, and increase the risk of litigation.2

Policy makers have proceeded cautiously in the face of these objections. The right to request a retrospective download of the record is embedded in legislation in many countries, but these are often provided at a high out-of-pocket cost. Following recent changes to the general practice contract, patients in England can now view at least part of their general practice record online or using an app, but most hospital records are still unavailable.3 Experience in Denmark, Estonia, and Sweden, where full record access has been available for many years, and in the US, where it has been underpinned by legislation and actively promoted, shows that the benefits outweigh the risks to a considerable degree.4

We wanted to know more about patients’ experiences of record access, so we got in touch with fellow members of The BMJ’s patient advisory panel to find out whether they had this facility and, if so, what use they made of it. The people we contacted are engaged and reasonably well informed, but many had struggled to access their medical notes. The panel is an international group (from countries such as Australia, Brazil, Canada, Columbia, Denmark, France, Germany, Mexico, Spain, UK, and US) and most of the 60 people we approached had some limited access to their primary care records but often only a small sub-section of these, such as laboratory reports, vaccinations, or medication lists.

Access to secondary care records was much less common, and several people said that access to any type of health record was unavailable in their country or region. Even those who were able to view online records from both primary and secondary care found it a cumbersome process because they had to log on to multiple unconnected systems. Only a lucky few could access their complete record through a single portal.

Several people were concerned about inaccuracies in their records, and we know that these are common.5 One woman was surprised to see that she had been recorded as having prostate disease. Most people wanted to correct the errors they had spotted because inaccuracies can lead to unsafe care, but they did not have interactive access and finding staff willing to make the corrections was hard.

Good access to medical records is highly valued by those who have it. They find the information useful to monitor their condition, view test results, prepare for appointments, check and order medications, and complete insurance forms. Those caring for family members find it invaluable for helping them manage their medications. Many of our panel members said that they liked to be able to show the record in clinical encounters with clinicians who lack access to notes recorded by others.

Access to healthcare has deteriorated in many countries since the covid pandemic. In this situation it’s even more crucial that patients are given the tools to self-manage their health as effectively as possible. Providing people with the facility to view their complete medical record, preferably using a single app or portal, is among the most valuable of these tools.

Patients know what they want and are saying it loud and clear—we want full interactive access to our medical records through well designed apps or portals that we can use to inform our decisions and manage our care. We want clinicians, managers, and policy makers to recognise that the benefits of enabling this—and allowing us to correct the record when necessary—vastly outweigh the risks. We think this is both an ethical imperative and a key plank of any strategy to support self-care. Facilitating this would mark an important cultural shift and free up professional time to focus support on those who need it most.