Ethics 2.0: Implications of Connected Health


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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.

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  • VW is 2nd life
  • Ethics 2.0: Implications of Connected Health

    1. 1. Ethics 2.0: Implications of Connected Health<br />Joan H. Dzenowagis<br />Kevin A. Clauson<br />Francisco J. Grajales III<br />
    2. 2. Ethics 2.0: Ethics and standards<br />
    3. 3. Ethics and standards<br />Medicine has long been guided by laws, codes, oaths and prayers<br />Lawyers practice under rules of conduct imposed by law, courts, professional societies<br />Journalists are guided by laws, professional and employer standards<br />Businesses must abide by laws and regulations, but in the market practices vary widely<br />
    4. 4. Are these sufficient in the information age?<br />Changing scale, pace and pattern of exchange<br />Changing relationships and business models<br />Interaction, linking multiple data sources<br />Trends in information exposure <br />
    5. 5. Does the use of social media in health pose special challenges?<br />What is &quot;correct and proper&quot; behaviour?<br />How do we judge/designate quality and reliability?<br />Whom do we trust to define it?<br />How do we encourage or enforce it?<br />
    6. 6. Objective<br />To explore ethical expectations of people using social media in health<br />
    7. 7. Ethics 2.0…your views<br />
    8. 8. Audience response system<br /><ul><li>Responses are anonymous
    9. 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. 10. Benefits to you: clarify and share ideas
    11. 11. If you do not wish to participate in this poll, simply refrain from using a clicker
    12. 12. Please answer all questions. If you are unfamiliar with a topic please select “I don’t know”</li></li></ul><li>What is your primary designation?<br />MD<br />Nurse/midwife<br />Student/trainee<br />Business/industry<br />Journalist/blogger<br />IT specialist<br />Library scientist<br />Patient/patient advocate<br />Academician/researcher<br />Other<br />
    13. 13. On an average day, how many hours do you spend on the web (including mWeb)?<br />&lt;1<br />1-4<br />5-8<br />9-11<br />≥12<br />
    14. 14. Which of these 2.0 services have you used?<br />Social networking<br />Microblogging<br />Video sharing<br />Blogs<br />Wikis<br />Forums/Listservs<br />Photo sharing<br />Other<br />None<br />
    15. 15. In which of these 2.0 services have you contributed content?<br />Social networking<br />Microblogging<br />Video sharing<br />Blogs<br />Wikis<br />Forums/Listservs<br />Photo sharing<br />Other<br />None<br />
    16. 16. Publicly available personal health data<br />
    17. 17. Who is the owner of the personal health data that an individual posts on a 2.0 site?<br />Site owner<br />Company who pays for the data<br />The individual<br />The individual gives up any rights when they share their data<br />I don’t know<br />
    18. 18. When using social media, privacy is violated when data are viewed or used by…<br />Site owners<br />A marketer who pays for the data<br />Any third party not in Terms of Use<br />No violation, as info is freely given<br />I don’t know<br />
    19. 19. In terms of data protection in Web 2.0…<br />Paid/subscr. services guard data better than free serv.<br />Privacy depends on business model <br />Protection is impossible<br />Benefits of a service are worth the risk <br />I don’t know<br />
    20. 20. HCP co-consults via 2.0 tools are acceptable if..<br />access is restricted to known community <br /> (1) and patient names are not disclosed<br />platform providers can keep data private<br />permitted by hospital/HCP assoc guidelines<br />Never acceptable<br />I don’t know<br />
    21. 21. HCP should keep their personal and professional web identities separate…<br />Always<br />Depends on their ability to manage it<br />No, it is not possible<br />Never – not ethical<br />I don’t know<br />
    22. 22. Personal and professional web identity standards should be managed through…<br />International codes of ethics<br />Specialty/professional codes<br />Legislation<br />Institutional policy or boards<br />It is up to the professional<br />I don’t know<br />
    23. 23. Regarding internet and health, who has the primary responsibility to protect consumers?<br />Int. organizations<br />National governments<br />Service providers <br />Law enforcement<br />Users<br />I don’t know<br />
    24. 24. Health information quality is not a societal concern; it is &quot;user beware&quot;<br />True<br />False<br />I don&apos;t know<br />
    25. 25. How many legal agreements is an unregistered YouTube user subject to?<br />None<br />1-3<br />4-5<br />&gt;6<br />It doesn&apos;t matter<br />I don&apos;t know<br />
    26. 26. YouTube’s Legally Binding Agreements<br />
    27. 27.
    28. 28. Ethics 2.0…from a Healthcare Provider’s Perspective<br />Ethics 2.0…from a Provider’s Perspective<br />
    29. 29. Evolving from Provider-Patient to Provider-ePatient Relationship<br />Valid (bona fide) relationship used to necessitate in-person consultations<br />Telemedicine, PHRs, and Medicine 2.0 are changing perceptions<br />Innovative practitioners & patients are driving change<br />Evolving from Provider-Patient to Provider-ePatient Relationship<br /><ul><li>Valid (bona fide) relationship used to necessitate in-person consultations
    30. 30. Telemedicine, PHRs, and Medicine 2.0 are changing perceptions
    31. 31. Combination of innovative practitioners & empowered patients are driving change</li></li></ul><li>Duty to Warn: Anytime a healthcare professional is obligated to provide information and/or take action due to situational knowledge they possess <br />
    32. 32. Examples of Duty to Warn<br />Patient tells psychotherapist/social worker he plans to kill his girlfriend (Tarasoff)<br />Patient’s immediate blood relative diagnosed and treated for genetically transmissible condition<br />Pharmacist receives two prescriptions from same physician treating different problems that have dangerous interaction<br />
    33. 33. Pharmacist-Patient Relationship<br />Forerunner of participatory medicine<br />Is a voluntary act “upon which a trusting relationship is grounded”<br />Process is patient initiated<br />Ethical responsibility in pharmacy practice. 2002.<br />
    34. 34. Which is MOST likely to establish legal pharmacist-patient relationship & duty to warn?<br />Pharmacist contribution to entry on drug in Wikipedia<br />Pharmacist posts on a social networking site<br />Discussion of drug therapy on a pharmacist’s blog<br />A series of podcasts voiced by one pharmacist<br />
    35. 35. Legal Duty to Warn versus Ethical Obligation for Medical Advice<br />
    36. 36. “Virtual Samaritans” are ethically responsible for the medical advice they provide online if they are:<br />a patient.<br />a registered clinician.<br />either a patient or a registered clinician.<br />It is solely the responsibility of the Web 2.0 provider.<br />None of the above<br />I don’t know<br />
    37. 37. Ethics 2.0…from a Researcher’s Perspective<br />
    38. 38. Virtual Informed Consent<br />
    39. 39. Does This Avatar Make Me Look Fat?<br />Study conducted in Second Life (SL)<br />Members of “facility’s Survey Group” were recruited<br />Interviewers and subjects were avatars<br />JVW Research 2009;2(2)<br />
    40. 40. What was the method used to obtain informed consent in the SL obesity study?<br />No informed consent (IC) ethics board, or IRB involvement was described<br />An object was created in SL that included a written IC form for participants<br />Interviewers used chat to inform participants<br />Subjects viewed a video detailing IC<br />
    41. 41. What is the most ethically sound method to obtain IC in a virtual world?<br />Create interactive video panel to review IC<br />Create immersive model to mimic study conditions<br />Review IC with subject via text chat<br />Review IC with subject via voice chat<br />Give subject an object with written IC to review<br />
    42. 42. Virtual informed consent (IC) is:<br />no different than offline IC in regards to rights and responsibilities for both subject and researcher.<br />different from offline IC because researchers may not be able to monitor subjects to same extent.<br />different from offline IC for rights and responsibilities of both subject and researcher.<br />I don’t know<br />
    43. 43. Questions?<br />
    44. 44. Contact<br />Dr. Joan Dzenowagis |<br />Dr. Kevin Clauson |<br />Francisco Grajales |<br />