Use of digital health records by individuals
Digital Health Evidence Review: This section describes how individuals access and use their electronic health information.
How do individuals access and manage their My Health Record?
The ways in which individuals can register for a My Health Record include: assisted registration by their healthcare provider; through the Department of Human Services; or online self-registration using the My Health Record website (i.e. consumer portal). Australia is moving to an ‘opt-out’ participation model, so that by the end of 2018, a My Health Record will be created for every Australian unless they choose not to have one.
Individuals can access their My Health Record in two ways: through their myGov account or by using one of the approved mobile apps (five at August 2018) that are authorised to connect to the My Health Record system. These apps offer more choice to people for viewing their My Health Record data by providing different types of displays, however do not allow download of any My Health Record data for third party use.
|1 x Portal||My Health Record||5 x Mobile Apps|
Individuals have a range of privacy controls that they can choose to apply to their My Health Record so that they can decide with whom they would like to share their personal health information.
|Decline Access: They can choose to decline access to specific documents in their My Health Record, as well as decline access to specific healthcare provider organisations.|
|Setup a code: They can set up a code that will mean only clinicians with permission can access their My Health Record. Additional codes to limit access can be applied to specific documents within the record.|
|Subscribe: They can subscribe to SMS or email alerts that report in real time when registered provider organisations access their My Health Record for the first time.|
|Emergency Access: In an emergency, a clinician can exercise a 'break glass' facility to access a patient's record who has restricted access- but instances are carefully monitored and reported to the individual.|
|Logged: All instances of access to My Health Record are logged in real time and show the consumer all instances of healthcare provider organisations accessing their record|
What information is available to individuals in the My Health Record system?
Similar to healthcare providers, individuals can view either single documents or summary views that combine information from a range of sources in their My Health Record. Within an individual's My Health Record sits health information they have authored as well as information added by their healthcare providers. Personal health notes can be entered by individuals, as well as Advance Care Planning documents and over-the-counter medications. The table below summarises the types of documents that are within the My Health Record system and who authors the documents.
What level of access do individuals have to their health information internationally?
The World Health Organization (WHO)’s 2015 Global Survey on eHealth provides insight into the international legal frameworks governing access to information within electronic health records (EHRs) in different countries. 
Data was collected on 125 WHO member states and the report showed that only only 29% of the surveyed countries report having legislation in place which allows individuals access to their own health-related information (e.g. medical history, medications, allergies) in an EHR. 
Moreover, a recent OECD report showed that 20 out of the 30 surveyed countries reported that patients could view information contained in their own record and 14 out of the 30 countries reported that patients could interact with their own record. 
An individual's access to their EHRs has been a key priority in the US and this is considered an advanced function of EHRs. Figure 1 below shows that the largest increase has been hospitals providing capabilities to enable patients to send their health information to another person or organisation with a 52% increase, followed by providing capabilities for downloading information with a 50% increase between 2013 and 2014. 
Figure 1 Percentage of hospitals adoption of patient engagement functionalities US, 2013 - 2014
What rights do individuals have to edit and author health information?
In Australia, individuals have the general right to access and correct health information as supported by the My Health Record Act and Australian privacy legislation.  Editing and authoring information means that individuals are able to change and add information. The legal frameworks that enable individuals to alter their health-related data varies globally.
From the 2015 WHO survey :
- Australia is moving to an opt-out participation model for My Health Record from December 2018.
- Participation model was trialled in 2016, with a 1.9% opt-out rate in trial sites and support of this model by clinicians and consumers.
- Citizens can exercise a range of privacy controls, including the ability to author or remove documents, block certain documents or full record, block healthcare provider organisations from viewing, give access to nominated representatives, set up alerts and notifications if a healthcare provider organisation views.
- Record created automatically at birth  but citizens can opt-out.
- 0.05% have closed off data to doctors at some point during 2018.
- Citizens can close of data to all doctors or specific doctors, block either all of their medical data or only a part of it, grant access to their health data to other citizens (e.g. carer).
- Citizens cannot edit or author, nor can they delete any health records.
- Citizens can hide certain information. 
- 40% of the population have accessed the portal.
- An opt-out participation model for record creation. 
- Citizens can block local municipal to use record and can block records associated with particular unit, register, in-patient period or individual visit. 
- 9.6% of population in July 2018 (528,753 unique users). 
- Total % since go-live unclear.
- An opt-in participation model for record creation. 
- 1.9% opt-in  or 1.25 million records created (July 2018) from target population of 66 million. 
- Citizens can author or edit parts of their record and restrict access to documents. 
- National redeployment is planned for October 2018. 
- Opt-out. There are two distinct processes for opting-out of portal vs opting-out of shared record with providers. 
- Estimated approx. 150 people (2018 to date). Estimated 20-30 people per month. 
- Citizens can block access to certain parts of the record or the entire record. Patients can add comments to their record in one region in Sweden only. 
- 1.8 million users = 18% of the population have accessed their medical records.  Over 1 million log-ins each month (not unique). 
How do individuals use their PHRs and portals?
National data from the US indicates that in 2017 over half of individuals, 52%, reported that they had been offered online access to their medical record by a health care provider or insurer.  Of the 52% that were offered access, 28% had viewed their record online in the past year and 24% did not view their record online in the past year.  Most individuals reported viewing their record 1 to 2 times in the year and the most common reasons for using the online record was to view test results (85%) or perform health-related tasks (e.g. refill prescriptions, make appointments) (62%). 
A subset of the US population where there is key data on the use of a portal is with the veteran population. In the US, the Department of Veterans Affairs provides health care to veterans. There are over 21 million veterans with more than 6 million currently receiving ongoing health care.  The My HealtheVet system is the portal that enables veterans to access their health information.
A snapshot of My HealtheVet activity between July and September 2017 showed:
- Just over 1.2 million users (i.e., 6% of total veterans) logged into My HealtheVet  equating to 20% of the veteran population receiving healthcare support
- There were over 1.5 million downloads of summary health records within the 1.2 million users equating to 1.3 downloads per person 
- In terms of frequency of use between October and December 2015, 78% of users reported using the website at least once a year, 45% reported once a month and 28% reported once a week 
Additional functions for which veterans use My HealtheVet include :
- 55% of users refilled a prescription and 27% tracked the prescription delivery
- 27% used secure messaging with their healthcare providers
- 34% viewed their appointments
Those who viewed their summary health information using the veterans affairs notes function reported that the key reasons for doing so were because they wanted to know more about their health, they were curious and they wanted to be sure they understood what healthcare providers had said. 
In Finland, individuals can access their health information through a portal called Kanta Pages. A snapshot of activity showed:
- As of December 2016, 1.89 million different individuals had accessed My Kanta pages since launch (approximately 35% of the population) 
- In September 2017, 524,690 individuals (9.7% of the population) accessed My Kanta pages 
- In September 2017, there were 1,142,008 logins, which is approximately 2 per person 
In Sweden, individuals can access their health information through a portal called Journalen. A snapshot of activity showed:
- As of February 2017, 37.9% of the population had set up accounts  and between 10,000 and 13,000 new users logged in every day nationally 
- As of December 2017, 46% or 4.6 million Swedish citizens had logged in to access services available on Journalen.  This is a significant increase from February 2017 when just over 1 million citizens had accessed their record 
- In April 2018, 1.8 million unique users accessed the Journalen e-service 
- There are approximately 1 million logins to Journalen each month 
Globally, providing individuals with access to a key summary of their electronic health information remains a priority for many countries in order to support patients in the self-management of their care and to facilitate communication between patients and healthcare providers. The type of access and control that individuals have with their electronic health information varies from simply viewing to being able to author and add their own information. In addition to accessing summary health information, individuals across the globe are being provided with functions through PHRs and portals that support them in the management of their health (e.g. e-consultation, renew prescriptions).
1 World Health Organization (WHO). Atlas of eHealth Country Profiles. 2015.
Available from: http://apps.who.int/iris/bitstream/10665/204523/1/9789241565219_eng.pdf [Accessed 1st Sept 2017].
2 Oderkirk J. OECD Health Working Paper No. 99 - Readiness of electronic health record systems to contribute to national health information and research. 2017.
3 American Hospital Association. Hospitals Advance Information Sharing, but External Barriers to Increased Data Exchange Remain. Feb 2016. https://www.aha.org/guidesreports/2016-02-29-trendwatch-hospitals-advance-information-sharing-external-barriers [Accessed 1st Nov 2017].
4 Office of the Australian Information Commissioner – Australian Government. Privacy fact sheet 50: Accessing and correcting your health information. Available from: https://www.oaic.gov.au/individuals/privacy-fact-sheets/health-and-digital-health/privacy-fact-sheet-50 [Accessed 9th July 2018].
5 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.
6 Brandstätter J. Email sent to: Meredith Makeham 30th May 2018.
7 Uffelmann J. Email sent to Meredith Makeham 23rd August 2018.
8 Milieu Ltd - time.lex. Overview of the national laws of electronic health records in the EU Member States and their interaction with the provision of cross-border eHealth services. 2014. Available from: https://ec.europa.eu/health/ehealth/projects/nationallaws_electronichealthrecords_en [Accessed 16th Dec 2017].
9 Kanta. Patient Rights. Available from: Available from: https://www.kanta.fi/en/patient-rights [Accessed 27th August 2018].
10 Kanta. The use of My Kanta pages in the last twelve months. Available from: https://www.kanta.fi/en/statistics [Accessed 27th August 2018].
11 Seroussi B. Email sent to: Meredith Makeham 16th July 2018.
12 Hägglund M. Email sent to Meredith Makeham 25th August 2018.
13 Accenture Consulting. Accenture 2016 Customer Survey on Patient Engagement - Global Report. Available from: https://www.accenture.com/t20160629T045304Z__w__/us-en/_acnmedia/PDF-15/Accenture-Patients-Want-A-Heavy-Dose-of-Digital-Research-Global-Report.pdf [Accessed 1st Nov 2017].
14 Patel V, Johnson C. Individuals’ use of online medical records and technology for health needs. ONC Data Brief, no. 40. 2018. Office of the National Coordinator for Health Information Technology: Washington DC.
15 Evans NC_. VA Connected Care: Enhancing Veteran Access and Experience in the USA_. HIMSS Annual Conference & Exhibition 2017. Available at: http://www.himss.eu/content/va-connected-care-enhancing-veteran-access-and-experience [Accessed 10th Oct 2017].
16 U.S. Department of Veterans Affairs. My HealtheVet Metrics. Available at: https://www.myhealth.va.gov/mhv-portal-web/webusers [Accessed 10th Oct 2017].
17 U.S. Department of Veterans Affairs. Hey, My HealtheVet You're in Good Company. Available at: https://www.myhealth.va.gov/documents/25286/25831/WhoUsesMHV.pdf/40d9fe08-02cb-4739-8621-d0ff0810230b [Accessed 10th Oct 2017].
18 Nazi K, Turvey C, Klein D, et al. VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes. Journal of the American Medical Informatics Association. 2014;22(2):380-389.
19 Hamalainen P. Governance for the Many Uses of EHR Data. European Health Telematics Association 2017 Symposium. Available at: https://www.ehtel.eu/references-files/ehtel-2017-symposium-going-all-digital/pdf2-data-driven-care/eht17%20PD2%203%20Paivi%20Hamalainen%20Governance%20for%20Many%20Uses%20of%20EHR.pdf/view [Accessed 19th Oct 2017].
20 My Kanta Pages. The use of My Kanta pages in last twelve months 2017. Available at: http://www.kanta.fi/documents/12105/4337108/Omakannan+k%C3%A4ytt%C3%B6+12kk+en/c47ffd48-213e-49c9-9bc2-bbcd9ee85331?t=1504603967000 [Accessed 23rd Nov 2017].
21 Armstrong S. Patient access to health records: striving for the Swedish ideal. The British Medical Journal.2017;357:j2069.
22 Scandurra I, Pettersson M, Hagglund M. When do people read their health record?: analysis of usage data of a national eHealth service giving patients access to their electronic health record. 2017 Conference paper presented at Informatics for Health 2017, Manchester, UK, April 24-26, 2017. Available at: http://www.diva-portal.org/smash/record.jsf?pid=diva2%3A1170442&dswid=-1939 [Accessed 14th June 2017].
23 Hagglund M. Email sent to: Meredith Makeham 24th May 2018.