An interactive panel chaired by Dr. Joan Dzenowagis on Ethics 2.0 that utilized an audience response system at Medicine 2.0 in 2009 at Toronto, Canada.

1. Ethics 2.0: Implications of Connected Health Joan H. Dzenowagis Kevin A. Clauson Francisco J. Grajales III

2. Ethics 2.0: Ethics and standards

3. Ethics and standards Medicine has long been guided by laws, codes, oaths and prayers Lawyers practice under rules of conduct imposed by law, courts, professional societies Journalists are guided by laws, professional and employer standards Businesses must abide by laws and regulations, but in the market practices vary widely

4. Are these sufficient in the information age? Changing scale, pace and pattern of exchange Changing relationships and business models Interaction, linking multiple data sources Trends in information exposure

5. Does the use of social media in health pose special challenges? What is "correct and proper" behaviour? How do we judge/designate quality and reliability? Whom do we trust to define it? How do we encourage or enforce it?

6. Objective To explore ethical expectations of people using social media in health

7. Ethics 2.0…your views

9. Benefits to the 2.0 community: results will help identify issues, serve as a basis for discussion and may be further disseminated (e.g., publication)

10. Benefits to you: clarify and share ideas

11. If you do not wish to participate in this poll, simply refrain from using a clicker

13. On an average day, how many hours do you spend on the web (including mWeb)? <1 1-4 5-8 9-11 ≥12

14. Which of these 2.0 services have you used? Social networking Microblogging Video sharing Blogs Wikis Forums/Listservs Photo sharing Other None

15. In which of these 2.0 services have you contributed content? Social networking Microblogging Video sharing Blogs Wikis Forums/Listservs Photo sharing Other None

16. Publicly available personal health data

17. Who is the owner of the personal health data that an individual posts on a 2.0 site? Site owner Company who pays for the data The individual The individual gives up any rights when they share their data I don’t know

18. When using social media, privacy is violated when data are viewed or used by… Site owners A marketer who pays for the data Any third party not in Terms of Use No violation, as info is freely given I don’t know

19. In terms of data protection in Web 2.0… Paid/subscr. services guard data better than free serv. Privacy depends on business model Protection is impossible Benefits of a service are worth the risk I don’t know

20. HCP co-consults via 2.0 tools are acceptable if.. access is restricted to known community (1) and patient names are not disclosed platform providers can keep data private permitted by hospital/HCP assoc guidelines Never acceptable I don’t know

21. HCP should keep their personal and professional web identities separate… Always Depends on their ability to manage it No, it is not possible Never – not ethical I don’t know

22. Personal and professional web identity standards should be managed through… International codes of ethics Specialty/professional codes Legislation Institutional policy or boards It is up to the professional I don’t know

23. Regarding internet and health, who has the primary responsibility to protect consumers? Int. organizations National governments Service providers Law enforcement Users I don’t know

24. Health information quality is not a societal concern; it is "user beware" True False I don't know

25. How many legal agreements is an unregistered YouTube user subject to? None 1-3 4-5 >6 It doesn't matter I don't know

26. YouTube’s Legally Binding Agreements

28. Ethics 2.0…from a Healthcare Provider’s Perspective Ethics 2.0…from a Provider’s Perspective

30. Telemedicine, PHRs, and Medicine 2.0 are changing perceptions

32. Examples of Duty to Warn Patient tells psychotherapist/social worker he plans to kill his girlfriend (Tarasoff) Patient’s immediate blood relative diagnosed and treated for genetically transmissible condition Pharmacist receives two prescriptions from same physician treating different problems that have dangerous interaction

33. Pharmacist-Patient Relationship Forerunner of participatory medicine Is a voluntary act “upon which a trusting relationship is grounded” Process is patient initiated Ethical responsibility in pharmacy practice. 2002.

34. Which is MOST likely to establish legal pharmacist-patient relationship & duty to warn? Pharmacist contribution to entry on drug in Wikipedia Pharmacist posts on a social networking site Discussion of drug therapy on a pharmacist’s blog A series of podcasts voiced by one pharmacist

35. Legal Duty to Warn versus Ethical Obligation for Medical Advice

36. “Virtual Samaritans” are ethically responsible for the medical advice they provide online if they are: a patient. a registered clinician. either a patient or a registered clinician. It is solely the responsibility of the Web 2.0 provider. None of the above I don’t know

37. Ethics 2.0…from a Researcher’s Perspective

38. Virtual Informed Consent

39. Does This Avatar Make Me Look Fat? Study conducted in Second Life (SL) Members of “facility’s Survey Group” were recruited Interviewers and subjects were avatars JVW Research 2009;2(2)

40. What was the method used to obtain informed consent in the SL obesity study? No informed consent (IC) ethics board, or IRB involvement was described An object was created in SL that included a written IC form for participants Interviewers used chat to inform participants Subjects viewed a video detailing IC

41. What is the most ethically sound method to obtain IC in a virtual world? Create interactive video panel to review IC Create immersive model to mimic study conditions Review IC with subject via text chat Review IC with subject via voice chat Give subject an object with written IC to review

42. Virtual informed consent (IC) is: no different than offline IC in regards to rights and responsibilities for both subject and researcher. different from offline IC because researchers may not be able to monitor subjects to same extent. different from offline IC for rights and responsibilities of both subject and researcher. I don’t know

43. Questions?

44. Contact Dr. Joan Dzenowagis | dzenowagisj@who.int Dr. Kevin Clauson | clauson@nova.edu Francisco Grajales | me@franciscograjales.com