The Ethics of Digital Health

transcript

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

I have no disclosures

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

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

Monitoring & Surveillance

Care coordination/delivery

Patient engagement & behavior change

But…. There are ethical concerns, right?

But….

What concerns do YOU have about digital health?

Whose ethical issues are they?

Patients

ResearchersProviders

Society

InsurersGovernment

Privacy Security

Trust Autonomy

Justice

Case Study #1: You are engaging in a #FOAMed discussion on Twitter about difficult intubation… and remember your case last night.

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….”

https://www.privacyrights.org/mobile-medical-apps-privacy-consumer-report.pdf

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”

Case #1: Twitter conversation…

• What privacy and security concerns do you have?

• What might be some solutions?

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

Case Study #2: A patient comes in and wants to show you data from a health-tracking app they’ve downloaded from the web….

3. Trust & Beneficence

Evidence in our field…

Case #2: A patient with a self-tracking “app”…

• What concerns do you have about trust and beneficence?

• 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

Case Study #3: A start-up approaches you to help them develop a predictive tool for “frequent flyers” based on your electronic health records…

4. Autonomy

Case #3

• What concerns do you have about patient autonomy?

• 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

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

• 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

Privacy Security

Trust Autonomy

Justice

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?

What should YOU do tomorrow?

• Engage! • Do research and engage in QI re:

digital health• Stay aware of the newest developments• Consent, consent, consent…

@brownedhi@meganranney

THANK YOU!

Questions?

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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.

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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

The Ethics of Digital Health

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