There was a significant piece of international healthcare news this year in April that you may have missed. It was such a momentous development—empowering people and providing them with access to their own health information—that it could only have been eclipsed by a global pandemic. Transparency took a leap forward for citizens of the United States on 5 April 2021 as the 21st Century Cures Act quietly came into effect, which mandated in its rule on “Interoperability, Information Blocking, and ONC Health IT Certification” that healthcare providers give patients access to all the health information in their electronic medical records, without charge and without delay. [1] 

This landmark change reflects international advances in transparency of health information. Many countries have now embedded laws that ensure people have the right to access their own health data. Personal electronic health records, which support this endeavour, are used increasingly. [2] An Australian example of this is the My Health Record system, a national online repository of health information freely available for Australian citizens who wish to access their own health data. [3] Commencing in 2012, all securely connected healthcare providers in hospital and community settings, both public and private, can view and contribute information to the system relating to people for whom they are providing care. It is both visible to and personally controlled by the individual healthcare recipient, meaning they can see everything in there, add personal health information, or remove things they would prefer not to have in there themselves. They also have the right to opt out of the system altogether with a phone call or online process, at which point their record is completely removed from the system. If they change their minds at a later date, they can re-open their record. Around 90% of Australians have a My Health Record, containing information such as discharge summaries from hospitals, prescriptions from pharmacies, pathology and imaging results, and health summaries from general practitioners. 

My Health Record also provides people with access to their own information in national health data repositories including the Australian Immunisation Register, which is recording all covid-19 immunisations being undertaken in the country. [4] The covid-19 pandemic has seen very large increases in virtual care provision in Australia including telehealth, and this has spurred an increase in patients and clinicians viewing My Health Record. [5] The My Health Record system also played an important role in recent years supporting people and communities who needed to be urgently evacuated from their homes as a result of bush fires and floods, and so were cut off from their regular healthcare providers. It allowed the healthcare professionals they saw in emergency evacuation centres to access information about the medications they were on, ensuring continuity of care with vital medication supplies. [6]

Change like this can be confronting for healthcare providers. It potentially affects the traditional power balance between clinicians and their patients, whose access to their own health information has not been common. It can sometimes be viewed by healthcare providers as disruptive and even potentially dangerous in some way. However the international evidence suggests that the opposite is true.

People who can access their own health information have been shown to have greater compliance with treatment regimens and a better understanding of their conditions. [7,8] It has also been suggested that with improved access to information, patients could be playing a greater role in detecting and preventing medical errors, such as the systemic problem in hospital and ambulatory care settings of missed test result follow up by clinicians, an issue that results in sadly avoidable harm for too many people. [9,10] 

In our information rich age, digital tools that allow people to see their own health data offer the greatest hope for keeping us safe and informed as we encounter our complex health systems. We are now entering an age where this has become a legislated right in many countries around the world. Our health systems need to embrace innovation and technology that offer this in a meaningful way, and recognise that access to information for people has an important role to play in improving safety and quality in healthcare.

 

Meredith Makeham, Professor and Associate Dean, Community and Primary Health Care, Faculty of Medicine and Health, The University of Sydney. 

Competing interests: none declared.

 

 

References:

1. https://www.healthit.gov/curesrule/
2. Nohr C, Wong MC, Turner P, Almond H, Pary L, Gilstad H, et al. Citizens’ Access to their Digital Health Data in Eleven Countries – A Comparative Study. Studies in Health Technology and Informatics. 2016; 228-685.
3. Makeham M. My Health Record: connecting Australians with their own health information. Health Inf Manag J 2019; 48: 3.
4. https://www.health.gov.au/sites/default/files/documents/2020/11/australian-covid-19- vaccination-policy.pdf
5. https://www.digitalhealth.gov.au/initiatives-and-programs/my-health-record/statistics#How%20are%20people%20using%20it
6. Makeham, M., 2020. Role of digital technology in delivering ‘healthy futures’ and ‘healthy cities’. Internal Medicine Journal, 50(11), pp.1408-1409.
7. Nazi KM, Turvey CL, Klein DM, Hogan TP, Woods SS. VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes. Journal of the American Medical Informatics Association. 2015 Mar 1;22(2):380-9.
8. Wright E, Darer J, Tang X, Thompson J, Tusing L, Fossa A, Delbanco T, Ngo L, Walker J. Sharing physician notes through an electronic portal is associated with improved medication adherence: quasi-experimental study. Journal of medical Internet research. 2015;17(10):e226.
9. Unruh KT, Pratt W. Patients as actors: the patient’s role in detecting, preventing, and recovering from medical errors. International journal of medical informatics. 2007 Jun 1;76:S236-44.
10. Callen JL, Westbrook JI, Georgiou A, Li J. Failure to follow-up test results for ambulatory patients: a systematic review. Journal of general internal medicine. 2012 Oct 1;27(10):1334-48.