1 Health Literacy – ethical considerations, especially in a digitalized world4th AHLA Conference on Health Literacy and Better Healthcare: November 2016 Prof. Diane Levin-Zamir, PhD, MPH, MCHES Director, National Department of Health Education and Promotion Clalit Health Services, Israel University of Haifa – School of Public Health, Israel IUHPE –Global Working Group Health Literacy

2 Presentation Outline Health literacy and ethics – why ?Defining the concept of ethics and its relevancy to health literacy Ethical considerations, new concerns with digital health and literacy Challenges for practitioners, policy makers and researchers

3 Ethics - Definition “A moral philosophy or code of morals practiced by a person or group of people” “Rules of behavior based on ideas about what is morally good and bad.” Merriam Webster Dictionary

4 Equity and Human RightsWhy Focus on Health Literacy? Equity and Human Rights

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6 Where lies ethical responsibility ?

7 E-health “eHealth as Healthcare practice supported by electronic processes and communication” (2001)  ”eHealth as a set of technological themes in health today, more specifically based on commerce, activities, stakeholders, outcomes, locations, or perspectives” (2005) Della Mea, Vincenzo (2001). "What is e-Health (2): The death of telemedicine?". Journal of Medical Internet Research. 3 (2): e22. doi: /jmir.3.2.e22. PMC   PMID  Retrieved   Oh, Hans; Rizo, Carlos; Enkin, Murray; Jadad, Alejandro; Powell, John; Pagliari, Claudia (24 February 2005). "What Is eHealth (3): A Systematic Review of Published Definitions". Journal of Medical Internet Research. 7 (1): e1.doi: /jmir.7.1.e1. PMC   PMID 

8 Forms of eHealth Electronic health record ePrescribingClinical decision support system Telemedicine Consumer health informatics E-learning Health knowledge management  Virtual healthcare teams Health /Healthcare information systems M-health or mHealth:

9 Why special attention to mHealth?Number of subscriptions: 5 Billion (2013) At least 85% of the globe covered by commercial wireless signal In many low an middle income countries – penetration surpasses infrastructure such as roads, electricity, etc.

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11 New vision of the challengeFrom “Digital Divide” “Digital Development”

12 Advantages (Depends on who you are asking)Overcomes distances Overcome language barriers Conveys real-time information Overcomes patient-provider barriers Can expedite the navigation of health services Can be cost-effective

13 Health Literacy – ethical considerations - especially in a digitalized worldWidespread use of digital systems to provide health information to: the public at large; to people receiving treatment in particular. As an increasing amount of manpower and other resources are dedicated to health literacy, within the healthcare system, ethical challenges need to be understood, addressed and barriers overcome.

14 mHealth mHealth involves the use and capitalization on a mobile phone’s core utility of voice and short messaging service (SMS) as well as more complex functionalities and applications including general packet radio service (GPRS), third and fourth generation mobile telecommunications (3G and 4G systems), global positioning system (GPS), and Bluetooth technology

15 Diffusion of Innovation – Stages of AdoptionLaggards 16% Early Adopters 13.5% Early Majority 34% Late Majority 34% Innovators 2.5% Percentage of Adopters by Category Sequence

16 Framework for Health Literacy Action Ethical Guidelines-main action areas Health education/health promotion practice– health promotion professionals Clinicians and care providers Clinical and Field Research Health Policy makers

17 On-Line Health Information in Hebrew, Arabic, Russian, French, PortuguesePlay > On-line health information 8 million entries/mo – 80% unique entries

18 eHealth literacy definition“the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem.” Skinner and Norman - J Med Internet Res Apr-Jun; 8(2): e9. Published online 2006 Jun 16. 

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21 Levin D, Gofin R, Lemish D. Health Education Research, 2011.Media Health Literacy Identification Intended action The extent to which an intention is expressed towards personal and/or social action (advocacy) as a result of the content in the media. The extent to which one recognizes content related to health Awareness Critical The extent to which one is aware of the potential influence of the content on the behavior on others The extent to which critical analysis expressed by the individual regarding the content to which he is exposed Levin D, Gofin R, Lemish D. Health Education Research, 2011.

22 - ensure that health information and tools are culturally appropriateHealth education and health promotion practice– health promotion professionals and all providers need to: - recognize the need for equitable and accessible distribution of health information and resources. - support for people to understand their rights to appropriate information, to have their dignity maintained - ensure that health information and tools are culturally appropriate

23 Health care providers "A person in need of health care and the professional health care provider who accepts that person as a patient enter into a relationship that requires, among other things, mutual respect, trust, honesty, and appropriate confidentiality."

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25 More digital aids Online personal health recordInformation prescriptions Navigation supports – nearest pharmacy that has supply of the medicine in e-prescription

26 Dilemmas for the futureWhen and how to obtain “informed consent” for specific digital media ? What happens if a patient refuses? How will digital health change the relationship between provider and patient?

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28 Privacy

29 New Frontiers – e Wearables

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31 Clinical and Field ResearchBig Data – who does it belong to?

32 Clinical and Field ResearchResearchers need to: - recognize the gaps in opportunity for participation in clinical research due to disparities in skills and access to information to calls for participation, mainly in digital sources. - reduce obvious selection bias exists in favor of those who have higher health literacy, when it comes to participation in research. - ensure that ethical practice is maintained in all research, including digital health literacy research.

33 Health Policy Policy makers need to:- be cautious and realistic in their expectations from the public - use and navigation of health services, as a result of information from digitalized sources. - establish curricula for health professionals including health literacy and how to treat people with compromised health literacy. - develop leadership to demonstrate the ethical considerations in planning health services and adopting them, taking into consideration the diverse population that are being served.

34 Dilemmas regarding legislationPublic Health Policy Dilemmas regarding legislation

35 Guiding ethical principlesRecognize the need for equitable access Design digital health solutions that work for all groups including cultural appropriateness. Make sure that the disadvantaged are not being left behind

36 In Conclusion Equity Privacy Security Accessibility Data ProtectionRecommendation: As the world shifts in a digital direction, guidelines are needed action to promote ethical action to promote health literacy taking into consideration: Equity Privacy Security Accessibility Data Protection

37 A parting thought… “Electric communication will never be a substitute for the face of someone who, with their soul, encourages another person to be brave and true.” Charles Dickens ( )

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39 Emerging ethical issues in digital health information.Solomonides AE, Mackey TK. Abstract The problems of poor or biased information and of misleading health and well-being advice on the Internet have been extensively documented. The recent decision by the Internet Corporation for Assigned Names and Numbers to authorize a large number of new generic, top-level domains, including some with a clear connection to health or healthcare, presents an opportunity to bring some order to this chaotic situation. In the case of the most general of these domains, ".health," experts advance a compelling argument in favor of some degree of content oversight and control. On the opposing side, advocates for an unrestricted and open Internet counter that this taken-for-granted principle is too valuable to be compromised, and that, once lost, it may never be recovered. We advance and provide evidence for a proposal to bridge the credibility gap in online health information by providing provenance information for websites in the .health domain. Emerging ethical issues in digital health information. Solomonides AE, Mackey TK 2015 Abstract The problems of poor or biased information and of misleading health and well-being advice on the Internet have been extensively documented. The recent decision by the Internet Corporation for Assigned Names and Numbers to authorize a large number of new generic, top-level domains, including some with a clear connection to health or healthcare, presents an opportunity to bring some order to this chaotic situation. In the case of the most general of these domains, ".health," experts advance a compelling argument in favor of some degree of content oversight and control. On the opposing side, advocates for an unrestricted and open Internet counter that this taken-for-granted principle is too valuable to be compromised, and that, once lost, it may never be recovered. We advance and provide evidence for a proposal to bridge the credibility gap in online health information by providing provenance information for websites in the .health domain.