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International Insights on Individual Engagement (the I-E)

International Insights on Individual Engagement

Member Stories and Other References

Introduction

1. Global Digital Health Partnership (GDHP). GDHP Vision.

gdhp.health. [Online] 2023.

2. World Health Organization (WHO). Health Equity. 

World Health Organization. [Online] 2023.

3. McKinsey & Company. Digital health: An opportunity to advance health equity. [Online] July 26, 2022.

4. National Health Service England. Supporting digital inclusion in general practice: 10 top tips.

NHS England. [Online] 2023.

5. All Party Parliamentary Group on Data Poverty. Data Poverty APPG State of the Nation report.

digitalpovertyalliance.org. [Online] October 26, 2022.

6. Global Digital Health Partnership (GDHP). Benefits Realisation: Sharing Insights.

gdhp.health. [Online] 2020.

7. Manatu, Hauora Ministry of Health New Zealand. Pae Ora | Healthy Futures for all New Zealanders.

Ministry of Health New Zealand. [Online] July 2023.

8. Hauora, Ministry of Health Manatu. Te Tiriti o Waitangi. 

Ministry of Health New Zealand. [Online] November 2022.

Governance

9. European Union. Complete guide to GDPR compliance. [Online]

10. European Commission. European Health Data Space.

eHealth: Digital health and care. [Online] 2023.

11. Brazil Ministry of Health. ORDINANCE NO. 589, OF MAY 20, 2015. [Online] May 2015.

12. Lanka, Parliament of the Socialist Democratic Republic of Sri. [Online]

13. Lanka, Parliament of the Democratic Socialist Republic of Sri. [Online]

15. Organizations, Information and Cyber Security Policy for Government. [Online]

16. Lanka, Ministry of Health Sri. National Digital Health Guidelines and Standards [NDHGS]. [Online]

18. Wikimedia Foundation. Caregiver.

Wikipedia. [Online]

19. Australian Digital Health Agency. Digital Health Learning: My Health Record.

Australian Digital Health Agency – Online Learning Portal. [Online] 2015-2021.

20. Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT. The ASTP/ONC Patient Engagement Playbook -- Integrate patient-generated health data and EHRs.

The ASTP/ONC Patient Engagement Playbook. [Online] May 30, 2018.

21. Patientrecord.ch. The EPR in short.

EPR Electronic Patient Record. [Online]

22. American Health Information Management Association (AHIMA). EHR Documentation. [Online] 2013.

23. Australian Government Office of the Australian Information Commissioner. My Health Record.

Office of the Australian Information Commissioner. [Online]

24. Portugal National Health System. SNS 24 Channels.

SNS 24. [Online]

25. Ireland Department of Health. Minister Donnelly receives Cabinet approval to develop new health information legislation.

gov.ie. [Online] April 19, 2022.

26. Canada Health Infoway. Understanding Canadians' experiences with digital health.

2022 Canadian Digital Health Survey. [Online] 2023.

27. Canadian Institute for Health Information. Assessing performance using PREMs data.

Patient Experience in Canadian Hospitals. [Online] May 26, 2022.

28. —. About the Canadian Patient Experiences Survey - Inpatient Care.

Canadian Institute for Health Information. [Online]

Digital Health Literacy

30. Digital Health Europe.

Digital Health Literacy. Digital Health Europe. [Online]

31. World Health Organization. Global Strategy on Digital Health 2020-2025. [Online] 2021.

32. EuroHealthNet. Digital health literacy: how new skills can help improve health, equity and sustainability.

eurohealthnet.eu. [Online] September 9, 2019.

33. GDHP Clinical and Human Engagement Workstream.

Digital Health Literacy Survey (internal to the GDHP). s.l. : Not yet published, 2023.

34. Canada Health Infoway. Empowering patients to better manage their care. 

Canada Health Infoway Patients Families & Caregivers. [Online]

35. —. Digital Health Equity Analysis: Access to Electronically-Enabled Health Services.

Canada Health Infoway. [Online] May 6, 2021.

36. The Swedish Internet Foundation. Chapter 2: E-services and the digital public sector in Sweden.

The Swedes and the Internet 2023. [Online]

37. Republic of Korea Ministry of Science and ICT and the National Information Society Agency. Digital Information Gap Survey. [Online] 2022.

38. University of Southampton. Health Literacy: Prevalence Estimates for Local Authorities.

healthliteracy.geodata.uk. [Online]

40. Computer Literacy Statistics 2021 Annual Bulletin Department of Census and Statistics.

Ministry of Finance, Economic Stabilization and National Policies. Department of Census & Statistics. Sri Lanka. [Online]

41. Bank, World. UNESCO Institute for Statistics (UIS). [Online]

42. DataReportal – Global Data Insights. Digital 2023: Sri Lanka. [Online]

43. Bank, World. Access to electricity (% of population) - Sri Lanka. [Online]

44. Datareportal. Digital 2023: Sri Lanka. [Online]

46. Strengthening health systems through informatics capacity development among doctors in low-resource contexts: the Sri Lankan experience. Siribaddana P, Hewapathirana R, Jayatilleke AU, Sahay S, Dissanayake VH. 8(2), s.l. : WHO South-East Asia journal of public health., 2019. 87-94.

47. 'Hybrid doctors' can fast track the evolution of a sustainable e-health ecosystem in low resource contexts: the Sri Lankan experience. Siribaddana P, Hewapathirana R, Sahay S, Jayatilleke A, Dissanayake VH. s.l. : InMEDINFO 2019: Health and Wellbeing e-Networks for All 2019. IOS Press. pp.1356-1360.

48. Sri Lanka Ministry of Health. Sri Lanka Digital Health Blueprint.

www.health.gov.lk. [Online] 2023.

49. A review of Telehealth practices in Sri Lanka in the context of the COVID-19 pandemic. Kulatunga GG, Hewapathirana R, Marasinghe RB, Dissanayake VH. s.l. : Sri Lanka Journal of Bio-Medical Informatics, 2020, Oct 20, Vols. 11(1):8-19.

50. Lanka, Ministry of Health Sri. Parliament of the Democratic Socialist republic of Sri Lanka. [Online]

51. Ireland Health Information Quality Authority. Guidance for providers of health and social services -- Communicating in plain English. [Online]

52. Kingdom of Saudi Arabia Ministry of Health. MOH Launches "Know Your Numbers" Campaign.

https://moh.gov.sa/. [Online] March 28, 2022.

53. Agency of E-Government and Society of Information and Knowledge. Guide to Creating Accessible Digital Documents. [Online] July 9, 2023.

54. Agency of E-Government and the Society of Information & Knowledge. Accessibility in Digital Environments Program.

gub.uy. [Online]

Individual Enrollment

55. Brazil Ministry of Health. Brazilian National Digital Health Strategy. [Online] 2020.

56. Government of Hong Kong, China. You and your Family.

Electronic Health Record Sharing System. [Online] 2020.

57. Ireland Department of Public Expenditure, NDP Delivery and Reform . Digital For Good: Ireland's Digital Inclusion Roadmap. [Online] August 11, 2023.

58. NBI - National Broadband Ireland. Welcome to National Broadband Ireland. [Online]

59. Ireland Department of Rural and Community Development. Social Inclusion and Community Activation Programme (SICAP).

Gov.ie. [Online] February 14, 2023.

60. Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT. Facilitate Easy Enrollment.

The ASTP/ONC Patient Engagement Playbook. [Online] May 31, 2019.

Individual Access to Health Records

19. Australian Digital Health Agency. Digital Health Learning: My Health Record.

Australian Digital Health Agency – Online Learning Portal. [Online] 2015-2021.

61. Health and Welfare Information Systems Centre (TEHIK). Health Information System.

TEHIK. [Online]

62. Austria Ministry of Labour, Social Affairs, Health and Consumer Protection. About elga.

ELGA. [Online]

63. —. Access and ELGA Portal.

ELGA. [Online]

64. Global Digital Health Partnership (GDHP). Citizen Access to Health Data.

GDHP.health. [Online] 2020.

65. Organisation for Economic Cooperation and Development (OECD). Towards an Integrated Health Information System in the Netherlands. [Online] February 16, 2022.

66. Office of the National Coordinator. Individuals’ Access and Use of Patient Portals and Smartphone Health Apps, 2022.

HealthIT.Gov Data Briefs. [Online] October 2023.

68. The Substance Abuse and Mental Health Services Administration (SAMHSA). SAMHSA Substance Abuse and Mental Health Services Administration.

SAMHSA. [Online]

69. Office of the National Coordinator. Security Tags for Sensitive Information.

HealthIT.gov Interoperability Standards Advisory. [Online]

70. U.S. Department of Health and Human Services. Health Information Privacy.

www.hhs.gov. [Online]

72. Ireland Health and Information Quality Authority. Findings of the National Public Engagement on Health Information.

Learning Hub. [Online] September 23, 2021.

73. Choi, Ju-Hee, Seol, Hee-Yun and Kim, Sung-Soo. Hospital Workers' Awareness and Attitude Towards Medical Records and OpenNotes.

The Journal of the Korea Contents Association, Volume 20 Issue 12. [Online] December 28, 2020.

74. Republic of Uruguay. Government web site.

Official site of the Oriental Republic of Uruguay. [Online]

75. zdrowie. Centrum e-Zdrowia. [Online]

76. patient.gov.pl. Ministry of Health and the National Health Fund. [Online]

Health Records Integration

47. 'Hybrid doctors' can fast track the evolution of a sustainable e-health ecosystem in low resource contexts: the Sri Lankan experience. Siribaddana P, Hewapathirana R, Sahay S, Jayatilleke A, Dissanayake VH. s.l. : InMEDINFO 2019: Health and Wellbeing e-Networks for All 2019. IOS Press. pp.1356-1360.

55. Brazil Ministry of Health. Brazilian National Digital Health Strategy. [Online] 2020.

66. Office of the National Coordinator. Individuals’ Access and Use of Patient Portals and Smartphone Health Apps, 2022.

HealthIT.Gov Data Briefs. [Online] October 2023.

77. Dutch Patients Federation. MedMij Framework.

Medmij.nl. [Online]

78. —. What is a PHE?

Medmij.nl. [Online]

79. European Commission.

Electronic cross-border health services in the EU. [Online]

80. Health Level Seven. Advancing the International Patient Summary.

The Official Blog of Health Level Seven International. [Online] December 1, 2021.

81. Brazil Ministry of Health. My Digital SUS.

gov.br. [Online]

83. Health Level Seven International. HL7 FHIR Release 5.

HL7 FHIR Release 5. [Online]

84. —. FHIR Overview – Patients.

HL7 FHIR Release 5. [Online]

85. Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT. Use APIs to help patients control their data.

The ASTP/ONC Patient Engagement Playbook. [Online] May 31, 2019.

86. —. View, Download, and Transmit Data from EHR.

HealthIT.gov Interoperablity Standards Advisory. [Online]

87. Swedish Internet Foundation. E-Services and the Digital Public Sector in Sweden.

Swedes and the Internet 2023. [Online]

Individual-to-Provider Communication

65. Organisation for Economic Cooperation and Development (OECD). Towards an Integrated Health Information System in the Netherlands. [Online] February 16, 2022.

88. GDHP Cyber Security Work Stream. Proposed Global Digital Health Model Security Notice.

gdhp.health. [Online] 2023.

89. Global Digital Health Partnership. GDHP Work Streams – Cyber Security.

GDHP Global Digital Health Partnership. [Online] 2023.

90. Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT. Set Up Secure Messaging.

The ASTP/ONC Patient Engagement Playbook. [Online]

91. —. Patient Exchanging Secure Messages with Care Providers.

HealthIT.gov Interoperability Standards Advisory. [Online]

92. Gracia, Nadine and DiSalvo, Dr. Karen. Advancing Health Equity in the Digital Age.

HealthIT.gov Blog. [Online] April 18, 2014.

93. NIH National Library of Medicine. Multichannel communication: new opportunities to maximize access to support for people affected by cancer.

PMC PubMed Central. [Online] December 9, 2006.

94. Ministerstwo Zdrowia.

LikarPL. [Online]

Virtual Care and Telehealth

6. Global Digital Health Partnership (GDHP). Benefits Realisation: Sharing Insights.

gdhp.health. [Online] 2020.

55. Brazil Ministry of Health. Brazilian National Digital Health Strategy. [Online] 2020.

79. European Commission.

Electronic cross-border health services in the EU. [Online]

95. World Health Organization (WHO).

WHO Guideline: Recommendation on Digital Interventions for Health System Strengthening. [Online] 2019.

97. NZ Telehealth Resource Centre. Your guide to Telehealth in NZ.

NZ TELEHEALTH FORUM & RESOURCE CENTRE. [Online] 2023.

98. Healthify He Puna Waiora. Telehealth topics.

Healthify He Puna Waiora. [Online]

99. Kingdom of Saudi Arabia Ministry of Health. SEHA Virtual Hospital.

www.moh.gov.sa. [Online]

100. Australian Digital Health Agency. Telehealth.

digitalhealth.gov.au. [Online]

Shared Decision Making

55. Brazil Ministry of Health. Brazilian National Digital Health Strategy. [Online] 2020.

84. —. FHIR Overview – Patients.

HL7 FHIR Release 5. [Online]

101. National Health Service United Kingdom.

Shared decision-making. [Online]

102. Alwariai, Sumaiah, et al. The OPTION Scale: Measuring Patients’ Perceptions of Shared Decision-Making in the Kingdom of Saudi Arabia.

NIH National Library of Medicine. [Online] October 30, 2020.

103. Al-Juwair, Mona M. Patients as active partners in decision-making: A qualitative exploration of the perspectives of people with T2D and their clinicians in a diabetes centre in Saudi Arabia.

University of Surrey. [Online] 11 17, 2020.

104. AHRQ Agency for Healthcare Research and Quality. The SHARE Approach: A Model for Shared Decision Making - Fact Sheet.

AHRQ Agency for Healthcare Research and Quality. [Online]

105. Melissa Simon, Cynthia Baur, Sara Guastello, Kalpana Ramiah, Janice Tufte, Kimberlydawn Wisdom, Michelle Johnston-Fleece, Anna Cupito, and Ayodola Anise. Patient and Family Engaged Care: An Essential Element of Health Equity.

National Academy of Medicine. [Online] July 13, 2020.

106. National Health Service. Dialog+.

NHS. [Online] DIALOG+ | East London NHS Foundation Trust (elft.nhs.uk)

107. The International Digital Health and AI Collaborative (I-DAIR). e-PROM.

I-DAIR. [Online]

109. Faith Birnbaum, Dana Lewis, Rochelle K. Rosen PhD, Megan L. Ranney MD, MPH. Patient Engagement and the Design of Digital Health.

Academic Emergency Medicine. [Online] May 21, 2015.

110. Lee, R.N., Ph.D., Jisan "Mari". WITH LAB – Warm IT for Health Laboratory. [Online] 2023.

111. Ireland Health Services Executive. National Patient Forum.

HSE Our Health Service. [Online]

Introduction

In 2023, the GDHP Secretariat, then led by the United States of America’s Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT (hereafter ASTP), worked with GDHP members to develop this resource focused on individual engagement through digital health. The I-E provides information to GDHP members and ...
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Governance

In this section, we will cover: What rights individuals have in countries regarding their health record What kind of data do individuals contribute to their health records How individuals could update their records How individuals and caregivers could grant others access to their health records How individuals and caregivers could ...
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Digital Health Literacy

In this section, we will cover: Why digital health literacy is important to individual engagement How the availability of technology affects digital health literacy How GDHP members educate individuals and increase digital health literacy How GDHP members overcome barriers to digital health literacy How GDHP members make digital health easier ...
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Individual Enrollment

In this section, we will cover: How individuals could get started and become engaged in digital health How individuals could participate in the enrollment process What GDHP members are doing to increase individual enrollment and adoption of digital health tools How Can Individuals Get Started? An initial step individuals take ...
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Individual Access to Health Records

In this section, we will cover: What individuals can see in their health records Whether individuals have access to their health data whenever and wherever they need it How individuals can see their health records combined across their healthcare providers How individuals can download data from their health records What ...
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Health Records Integration

In this section, we will cover: What individuals could do with their digital health records after viewing and downloading them How individuals could share their records with other providers and individuals How individuals could integrate their records with other systems or apps of their choice How industry standards could enable ...
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