More Related Content
What's hot
What's hot (20)
Viewers also liked
Viewers also liked (20)
Similar to The Ethics of Digital Health
Similar to The Ethics of Digital Health (20)
Recently uploaded
Recently uploaded (20)
The Ethics of Digital Health
- 1. The Ethics of Digital Health (Clinical & Research) Megan L. Ranney MD MPH Assistant Professor, Dept of Emergency Medicine Director, Emergency Digital Health Innovation Program Brown University @meganranney / @brownedhi #bioethx #digitalhealth #emconf
- 2. I have no disclosures
- 3. 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
- 6. ED patients have access to digital technology…and they WANT digital health - 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 Ranney, Choo, et al Annals of EM 2012
- 11. Patient engagement & behavior change
- 13. But…. There are ethical concerns, right?
- 14. But….
- 15. What concerns do YOU have about digital health?
- 16. Whose ethical issues are they? Patients Providers Researchers Society Insurers Government
- 17. Privacy Security Trust Autonomy Justice
- 18. Case Study #1: You are engaging in a #FOAMed discussion on Twitter about difficult intubation… and remember your case last night.
- 19. 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….”
- 21. 1. Privacy/Confidentiality https://www.privacyrights.org/mobile-medical-apps-privacy- consumer-report.pdf
- 24. 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”
- 27. Case #1: Twitter conversation… • What privacy and security concerns do you have? • What might be some solutions?
- 28. 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
- 29. Case Study #2: A patient comes in and wants to show you data from a health-tracking app they’ve downloaded from the web….
- 30. 3. Trust & Beneficence
- 33. Evidence in our field…
- 36. Case #2: A patient with a self-tracking “app”… • What concerns do you have about trust and beneficence? • What might be some solutions?
- 37. 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
- 38. Case Study #3: A start-up approaches you to help them develop a predictive tool for “frequent flyers” based on your electronic health records…
- 39. 4. Autonomy
- 44. Case #3 • What concerns do you have about patient autonomy? • What might be some solutions?
- 45. 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
- 46. 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
- 48. 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
- 49. Privacy Security Trust Autonomy Justice
- 50. 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?
- 51. What should YOU do tomorrow? • Engage! • Do research and engage in QI re: digital health • Stay aware of the newest developments • Consent, consent, consent…
- 52. Questions? @brownedhi @meganranney THANK YOU!
- 53. REFERENCES Burls 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
Editor's Notes
- I’m going to discuss each of these potential issues. I’m then going to ask you guys to brainstorm the issues associated with a certain digital health topic; and to come up with some potential solutions. We’ll discuss the latter as a group. I’ll close with a summary of key points, and a little time for Q&A!
- OK, so let me start by describing what digital health IS and why it matters. For some of you this will be old hat, for others it will be something very new and different – and I want to make sure that we go through the lecture all on the same page. So, OK, has anyone hear ever heard of the term “digital health”? In essence, it’s the intersection between technology and health. The term was popularized by Eric Topol, a cardiologist, to describe the convergence between various new forms of technology and the need for significant changes in health care delivery.
- In this talk, I’ll focus on a few areas that I and my colleagues at Brown work on – I’m not necessarily talking about health IT (EHRs) although that can contribute. Who can list a few of these for me?
- And digital health should matter to us, because it matters to our patients. For instance, this is a survey of our ED patients in 2011. 50% were low income. They ranged in age from 13-99 Interestingly, recent national data shows that these stats have increased: 56% of American adults have smartphones 73% of American adults use social media Text-messaging is more likely to be used by lower income patients and Hispanic patietns And 90% are interested in a tech-based platform to improve their health. Rapid growth is seen in ownership of tablets, smartphones, and social media use as well.
- Existing digital heatlh tools get divided into a few “boxes.” The 1st is monitoring & surveillance, either on a patient level or on a population level. This can be things like tracking the frequency of tweets about certain conditions; or can involve tracking patients’ vital signs, and reporting this to doctors; or can involve in-the-moment monitoring, such as the AliveCor device. This is also stuff like what Anand Shah, one of our former residents, is doing with “big data” – using patients’ own data to predict who will do poorly, and then targeting resources to them.
- The 2nd big category is actual delivery of care. This ranges from the program on the left – from Mayo Clinic – to helping patients to triage themselves, to actual online care delivery.
- The 2nd big category is actual delivery of care. This ranges from the program on the left – from Mayo Clinic – to helping patients to triage themselves, to actual online care delivery.
- The 2nd big category is actual delivery of care. This ranges from the program on the left – from Mayo Clinic – to helping patients to triage themselves, to actual online care delivery.
- 3rd is the idea of using digital health to improve patient care through patient engagement. This is the realm in which I spend most of my time – working on apps and text-messaging programs to improve pts’ own coping skills and awareness of their own health conditions. This is an area with a fair amount of evidence….
- In theory, something like THIS will be possible for the future:
- I’m not here to be a scare-mongerer. I am a strong believer that we can, and MUST, use digital health in an ethical and responsible way. But it is a headline-grabber, and we have to be careful about how we use it.
- So obviously bioethics impacts our entire society. And there are issues that have to be determined by society, government, and insurers – for instance, how “big brother” is a digital health intervention? But today I’m going to focus on the more proximal issues – those faced by patients, providers, and researchers.
- For each of these case studies, I want you to consider these major areas of ethical quandary, and to come up with solutions that will make you as PROVIDERS feel that it’s ethically ok.
- The first issue, and the one that most hc providers identify 1st, is the issue of privacy & confidentiality. We are all used to HIPAA. And so this is how we usually think about privacy:
- The age of the fax vs the age of twitter, skype, and pinterest…. The possibility for transmitting information to the wrong person is HUGE. And so this is the ethical issue that many people get hung up on. But it’s also the easiest one to fix, as we’ll discuss below.
- The 2nd major ethical issue has to do with resale of info. For instance, 72% of popular medical apps presented medium-to-high risk with regard to personal privacy (lower risk if paid app vs free) Disclosure to 3rd parties without consent No ability to opt out Tracking info that you haven’t consented for
- The 3rd big privacy issue with digital health is ambient privacy (will others see your phone msgs, FB/Twitter feed etc; especially important if shared phones) There are also issues of mobility! (What if it is stolen? What if someone sees your app?)
- Finally, there is the issue that patients could be identified. Despite plans to anonymize data, a few recent studies have shown how easy it is to de-anonymize. For instance, could identify ppl from FB experiment; data from personal genome project could be identified using only 3 data sources!) Stigma: potential implications if privacy is breached
- The 2nd major issue is security - BaSically, whether someone can “hack” into it – how you keep the info from being stolen Administrative, technical, & physical safeguards to keep info SECURE. Again, this is a pretty easy issue to address in reality – it’s something that our IT suites are already working on, on a regular basis. Each new device provides new challenges, but these aren’t unfixable – you just have to think about them.
- Neither text-messaging nor wireless upload of data (from apps) are necessarily secure Issue of data storage if using 3rd-party developers/apps
- Asynchronous communication
- I will say that, interestingly, privacy, confidetntiality, and security are the things that patients are LEAST concerned about, in surveys!
- This is probably the biggest issue. There is an issue of trust - In the provider and in the product. Ethical issues in recommending apps Need for certification process (lack of clarity from FDA or outside bodies)
- There is also the trust issue related to funding…
- Finally, there’s the issue of how this influences the physician-patient relationship. Does the use of digital heatlh affect our healing power? Does it denigrate our expertise? What happens if Watson’s IBM really comes to pass?
- Informed consent for research
- Right to access their own data – increasing moves toward this, with programs like “blue button” and “open notes” but far from adequate.
- Right to use make one’s own decisions To use resources that we may NOT consider “effective” To NOT use resources that we DO consider “effective”
- For each of these case studies, I want you to consider these major areas of ethical quandary, and to come up with solutions that will make you as PROVIDERS feel that it’s ethically ok.