The Ethics of Digital Health
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Transcript of The Ethics of Digital Health
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The Ethics of Digital Health (Clinical & Research)
Megan L. Ranney MD MPHAssistant Professor, Dept of Emergency Medicine
Director, Emergency Digital Health Innovation ProgramBrown University
@meganranney / @brownedhi
#bioethx #digitalhealth #emconf
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I have no disclosures
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Our goals today:
1) Define 3 ways that digital health technology can be used by healthcare providers in the workplace.
2) Analyze at least 1 potential ethical dilemma for each form of digital health discussed.
3) Describe strategies to mitigate these potential ethical issues in digital health
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ED patients have access to digital technology…and they WANT digital health
Ranney, Choo, et al Annals of EM 2012
- 95% of ED patients have SMS-capable cellphone- Almost 50% had a smartphone as of 2011- 2/3 used social media as of 2011- 90% were interested in tech-based platform to improve their health
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Monitoring & Surveillance
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Care coordination/delivery
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Care coordination/delivery
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Care coordination/delivery
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Patient engagement & behavior change
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But…. There are ethical concerns, right?
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But….
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What concerns do YOU have about digital health?
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Whose ethical issues are they?
Patients
ResearchersProviders
Society
InsurersGovernment
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Privacy Security
Trust Autonomy
Justice
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Case Study #1: You are engaging in a #FOAMed discussion on Twitter about difficult intubation… and remember your case last night.
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1. Privacy/Confidentiality
HIPAA Privacy Rule:
“Establishes national standards to protect individuals’ medical records & other personal health information, and applies to health plans, health care clearinghouses, and those healthcare providers that conduct certain health care transactions electronically….”
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1. Privacy/Confidentiality
https://www.privacyrights.org/mobile-medical-apps-privacy-consumer-report.pdf
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1. Privacy/Confidentiality
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2. Security
• HIPAA Security Rule: “establishes national standards to protect individuals’ electronic PHI that is created, received, used, or maintained by a covered entity”
• HITECH Act : “addresses the privacy and security concerns associated with the electronic transmission of health information in part, through several provisions that strengthen the civil & criminal enforcement of the HIPAA rules”
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Case #1: Twitter conversation…
• What privacy and security concerns do you have?
• What might be some solutions?
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What the experts say…
• Consent, consent, consent• Minimize presence of PHI in interventions• Do NOT use PHI on social media• Minimize access to data sets• Make both the participant and the program
unidentifiable• Encrypt, use firewalls, use passwords
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Case Study #2: A patient comes in and wants to show you data from a health-tracking app they’ve downloaded from the web….
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3. Trust & Beneficence
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Evidence in our field…
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Case #2: A patient with a self-tracking “app”…
• What concerns do you have about trust and beneficence?
• What might be some solutions?
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What the experts say…
• Do research!!• Consent• Disclose risks• Disclose COI – and be aware of it• Disclose presence (or non-presence) of
humans “on the other end” of the intervention
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Case Study #3: A start-up approaches you to help them develop a predictive tool for “frequent flyers” based on your electronic health records…
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4. Autonomy
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Case #3
• What concerns do you have about patient autonomy?
• What might be some solutions?
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What the experts say…
• Consent! • Incorporate patients’ voices & opinions• Create (or work with) other organizations to
certify (e.g FDA, Happtique)• Work with your hospital – CMIO, VP of
research, publicity, and IRB
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4. Justice/Equitable access
• “Digital divide”• Particularly important for our ED patients
– Substance use– Mental illness– Racial/ethnic minorities– Low-income patients– Disabilities or chronic disease
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What the experts say…
• Be aware of the need for equitable access• Design and incorporate digital health solutions
that work for all groups• Work with companies who are dedicated to
care of the underserved
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Privacy Security
Trust Autonomy
Justice
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Questions for the future…
• When and how to obtain “informed consent” for certain digital media
• How will digital health change the relationship between provider and patient?
• What if a patient refuses to use or refuses access?
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What should YOU do tomorrow?
• Engage! • Do research and engage in QI re:
digital health• Stay aware of the newest developments• Consent, consent, consent…
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@brownedhi@meganranney
THANK YOU!
Questions?
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REFERENCESBurls A, et al. “Tackling ethical issues in health technology assessment: a proposed
framework.” Intl J Tech Assess Health Care 2011 27(3): 230-237. Cohen IG, Amarasingham R, Shah A, Xie B, Lo B. “The legal and ethical concerns that
arise from using complex predictive analytics in health care.” Health Affairs 2014 33(7):1139-1147.
Labrique AB, Kirk GD, Westergaard RP, Merritt MW. “Ethical issue in mHealth research involving persons living with HIV/AIDS and substance abuse”. AIDS Research Treatment 2013
Faden RR, Kass NE, Goodman SN, Pronovost P, Tunis S, Beauchamp TL. “An ethics framework for a learning health care system: A departure from traditional research ethics and clinical ethics.” Hastings Ctr Report 2013 43(s1):S16-S27.
Khoja S, Durrani H, Nayani P, Fahim A. “Scope of policy issues in eHealth: Results from a structured literature review”. JMIR 2012 14(1):e34.
Myers J, Frieden TR, Bherwani KM, Henning KJ. “Privacy and public health at risk: Public health confidentiality in the digital age”. AJPH 2008 98(5):793-801.
Shilton K, Estrin D. “Ethical Issues in Participatory Sensing.” CORE Issues in Professional and Research Ethics 2012 1(Paper 5).
Sweeney L, Abu A, Winn J. Identifying participants in the personal genome project by name. Harvard University. Data Privacy Lab. White Paper 1021-1. April 24, 2013. Available at: http://dataprivacylab.org/projects/pgp/
Townsend A, Adam P, Li LC, McDonald M, Backman CL. “Exploirng eHealth ethics and multi-morbidity: protocol for an interview and focus group study of patient and health care provider views and experiences of using digital media for health purposes.” JMIR Res Protoc 2013 2(2):e38