Patients’ access to health recordsBMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l5725 (Published 02 October 2019) Cite this as: BMJ 2019;367:l5725
- Maria Hägglund, associate professor1,
- Catherine DesRoches, associate professor2,
- Carolyn Petersen, assistant professor3,
- Isabella Scandurra, assistant professor4
- 1Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden
- 2Harvard Medical School and Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
- 3Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota, USA
- 4Informatics, Örebro University School of Business, Örebro, Sweden
- Correspondence to: M Hägglund
The international movement pushing to increase transparency by giving patients easy access to their health information parallels a broader shift in healthcare towards increased patient empowerment and participation. In the United States, the philanthropic OpenNotes initiative works to increase transparency by encouraging healthcare organisations to provide patients with access to notes in their electronic health record. It began in 2010 as a pilot that included 105 volunteer primary care providers and their 19 000 patients12 and has since spread throughout the US, with more than 200 organisations offering roughly 41 million patients access to their clinical notes.3
In Sweden, the first region-wide implementation of patient access to electronic health records was in 2012, more than 10 years after the first pilot study.4 All 21 Swedish regions have now offered this e-service through a national patient portal that integrates with all electronic health record systems currently used in Sweden. More than 3 million people (>30% of the population) had accessed their records online by August 2019, and more than 2 million logins occur each month.
Similar patient accessible electronic record systems are implemented in other countries, though different strategies and approaches have influenced uptake and impact.5 Progress has been slow because of legal constraints, technical challenges, and concerns or resistance among healthcare professionals.6 Low rates of adoption among patients have also been a problem in some areas.6 Nonetheless, research evidence reports positive outcomes78 among patients accessing their records, and the concerns expressed by healthcare professionals have not been realised. Patients who read their notes report understanding their care plans better,8 feeling more in control of their care,78 doing a better job taking their medications,9 improved communication with and trust in their clinicians,79 and improved patient safety.10
Given increasing evidence of the benefits of transparency and little evidence of harm, what is putting a brake on further progress? Poor interoperability between electronic health record systems and other data sources remains a problem. Patients may need to use several different systems to access all of their data, causing fragmentation and frustration.5 Although recent developments by Apple show promise for integrating data from multiple record systems onto a patient’s iPhone, the data are fairly rudimentary and functionality is limited. Furthermore, some patients may find smartphones difficult to use, particularly older people, those with cognitive disabilities (including dementia), and people with physical disabilities.
In Nordic countries, national patient accessible records are integrated with different electronic record systems to facilitate access.411 Promising new interoperability standards such as the open source Fast Healthcare Interoperability Resources (FHIR, www.hl7.org/fhir) may prove essential in achieving patient centred rather than provider centred access to data, though some providers struggle to keep apps compliant with the current FHIR version.
Another problem is that national regulations are not enough to guarantee patients easy access to their health data. Lack of access remains the norm, even where regulations allow or mandate transparency. Effective enforcement efforts are also required.
In the US, more than half of healthcare providers fail to comply with existing regulations.12 In Sweden none of the 21 regions fully comply with the 2016 national regulatory framework,13 and in Germany few patients can access their records online despite a legal right to full transparency.14 Further incentives to implement these and other transparency regulations may be required, along with robust sanctions for non-compliance.
Barriers to adoption must be reduced by improving the design and usability of patient accessible records, ensuring that signing up for access is simple and quick, designing systems that are adaptable to different devices and different users’ needs, and developing strong, privacy and security technologies that promote patient trust that their information will be safely managed and transmitted. Education and promotion will also be required to reach vulnerableindividuals and populations who may be disinclined to adopt these technologies but have most to gain from access.8
Finally, it is essential to understand how differences in context, design of patient accessible electronic records, and characteristics of users (both patients and clinicians) will affect successful implementation. The benefits of access come when people engage with their health information and use it to make decisions and manage their care. Reaching that level of engagement may take substantial effort, but without it we lose an opportunity to improve care to the mutual benefit of patients and clinicians.
Competing interests: We have read and understood BMJ policy on declaration of interests and declare the following interests: CDR is the executive director of OpenNotes, a philanthropically funded research initiative focused on improving transparency in healthcare. MH is a Keane OpenNotes scholar visiting the OpenNotes team during 2019. IS and MH are members of the Swedish DOME research consortium, a network of researchers focusing on evaluations of patients’ access to their electronic health records and other innovative eHealth services.
Provenance and peer review: Commissioned; not externally peer reviewed.