Access and use by individuals

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Digital Health Evidence Review: This section describes how individuals from other countries generally access and use their electronic health information.

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 legal frameworks governing access to information within EHRs in different countries. [1]

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.

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 in individuals sending their health information to another person or organisation with a 52% increase, followed by downloading information with a 50% increase between 2013 and 2014. [2]

Figure 1 Percentage of individuals reporting different types of access to EHRs in the US, 2013 - 2014


What rights do individuals have to edit and author health information?

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 [1]:

32% of surveyed countries had legislation in place that allowed individuals to request corrections to their own health-related data in EHR
18% had legislation that allowed individuals to demand the deletion of health-related data
28% had legislation that allowed individuals to specify which health-related data is shared with health professionals of their choice

Digital Health Review LogoAdvanced levels of editing in EHRs is limited. In one recent study comparing European countries to Australia and New Zealand, only Australia and France allowed individuals to edit or author parts of their record but over half the included countries allowed individuals to restrict access to specific information. [3]

How do individuals use their PHRs and portals?

Individual access iconGlobally, individuals are reporting limited levels of use of their health records. [4] In 2015, an average of 30% of individuals surveyed globally reported accessing their health record electronically. [4] Individuals are also using their PHRs and portals for additional functions such as renewing prescriptions, e-consultations with GPs, accessing dental records, and viewing upcoming medical appointments. [3] Below are examples of individuals’ use in the US, Finland and UK.

In the US, the Department of Veterans Affairs provides healthcare to veterans. There are over 21 million veterans with more than 6 million currently receiving ongoing healthcare. [5] 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 [6] 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[6]
  • 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[7]

Additional functions for which veterans use My HealhteVet include[7]:

  • 55% of users refilled a prescription and 27% tracked the prescription delivery
  • 27% used secure messaging with their healthcare providers
  • 34% viewed their appointments

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) [8]
  • In September 2017, 524,690 individuals (9.7% of the population) accessed My Kanta pages [9]
  • In September 2017, there were 1,142,008 logins, which is approximately 2 per person [9]

In the UK there is no national online website for individuals to access their health records electronically but patients can have access to summary information from their GP records. A recent survey of primary care patients in UK showed:

  • Of the over 800,000 individuals surveyed, 8.9% were aware that they were able to access health records [10]
  • Only 1.6% said they used online services to access their health records [10]

Summary

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 American Hospital Association. Hospitals Advance Information Sharing, but External Barriers to Increased Data Exchange Remain. Feb 2016.
Available from: https://www.aha.org/guidesreports/2016-02-29-trendwatch-hospitals-advance-information-sharing-external-barriers [Accessed 1st Nov 2017].

3 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.

4 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].

5 Evans NC_. VA Connected Care: Enhancing Veteran Access and Experience in the USA_. HIMSS Annual Conference & Exhibition 2017.
Available from: http://www.himss.eu/content/va-connected-care-enhancing-veteran-access-and-experience [Accessed 10th Oct 2017].

6 U.S. Department of Veterans Affairs. My HealtheVet Metrics. Available from: https://www.myhealth.va.gov/mhv-portal-web/webusers [Accessed 10th Oct 2017].

7 U.S. Department of Veterans Affairs. Hey, My HealtheVet You're in Good Company.
Available from: https://www.myhealth.va.gov/documents/25286/25831/WhoUsesMHV.pdf/40d9fe08-02cb-4739-8621-d0ff0810230b [Accessed 10th Oct 2017]

8 Hamalainen P. Governance for the Many Uses of EHR Data. European Health Telematics Association 2017 Symposium.
Available from: 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].

9 My Kanta Pages. The use of My Kanta pages in last twelve months 2017.
Available from: 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].

10 National Health Service (NHS) England. GP Patient Survey 2017.
Available from: https://www.england.nhs.uk/statistics/2017/07/06/gp-patient-survey-2017 [Accessed 3rd Nov 2017]