Ethics 2.0: Implications of Connected HealthJoan H. DzenowagisKevin A. ClausonFrancisco J. Grajales III

Ethics 2.0: Ethics and standards

Ethics and standardsMedicine has long been guided by laws, codes, oaths and prayersLawyers practice under rules of conduct imposed by law, courts, professional societiesJournalists are guided by laws, professional and employer standardsBusinesses must abide by laws and regulations, but in the market practices vary widely

Are these sufficient in the information age?Changing scale, pace and pattern of exchangeChanging relationships and business modelsInteraction, linking multiple data sourcesTrends in information exposure

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?

ObjectiveTo explore ethical expectations of people using social media in health

Ethics 2.0…your views

Audience response systemResponses are anonymous 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)Benefits to you: clarify and share ideasIf you do not wish to participate in this poll, simply refrain from using a clickerPlease answer all questions. If you are unfamiliar with a topic please select “I don’t know”

Responses are anonymous

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)

Benefits to you: clarify and share ideas

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

Please answer all questions. If you are unfamiliar with a topic please select “I don’t know”

What is your primary designation?MDNurse/midwifeStudent/traineeBusiness/industryJournalist/bloggerIT specialistLibrary scientistPatient/patient advocateAcademician/researcherOther

On an average day, how many hours do you spend on the web (including mWeb)?<11-45-89-11≥12

Which of these 2.0 services have you used?Social networkingMicrobloggingVideo sharingBlogsWikisForums/ListservsPhoto sharingOtherNone

In which of these 2.0 services have you contributed content?Social networkingMicrobloggingVideo sharingBlogsWikisForums/ListservsPhoto sharingOtherNone

Publicly available personal health data

Who is the owner of the personal health data that an individual posts on a 2.0 site?Site ownerCompany who pays for the dataThe individualThe individual gives up any rights when they share their dataI don’t know

When using social media, privacy is violated when data are viewed or used by…Site ownersA marketer who pays for the dataAny third party not in Terms of UseNo violation, as info is freely givenI don’t know

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 impossibleBenefits of a service are worth the risk I don’t know

HCP co-consults via 2.0 tools are acceptable if..access is restricted to known community (1) and patient names are not disclosedplatform providers can keep data privatepermitted by hospital/HCP assoc guidelinesNever acceptableI don’t know

HCP should keep their personal and professional web identities separate…AlwaysDepends on their ability to manage itNo, it is not possibleNever – not ethicalI don’t know

Personal and professional web identity standards should be managed through…International codes of ethicsSpecialty/professional codesLegislationInstitutional policy or boardsIt is up to the professionalI don’t know

Regarding internet and health, who has the primary responsibility to protect consumers?Int. organizationsNational governmentsService providers Law enforcementUsersI don’t know

Health information quality is not a societal concern; it is "user beware"TrueFalseI don't know

How many legal agreements is an unregistered YouTube user subject to?None1-34-5>6It doesn't matterI don't know

YouTube’s Legally Binding Agreements

Ethics 2.0…from a Healthcare Provider’s PerspectiveEthics 2.0…from a Provider’s Perspective

Evolving from Provider-Patient to Provider-ePatient RelationshipValid (bona fide) relationship used to necessitate in-person consultationsTelemedicine, PHRs, and Medicine 2.0 are changing perceptionsInnovative practitioners & patients are driving changeEvolving from Provider-Patient to Provider-ePatient RelationshipValid (bona fide) relationship used to necessitate in-person consultationsTelemedicine, PHRs, and Medicine 2.0 are changing perceptionsCombination of innovative practitioners & empowered patients are driving change

Valid (bona fide) relationship used to necessitate in-person consultations

Telemedicine, PHRs, and Medicine 2.0 are changing perceptions

Combination of innovative practitioners & empowered patients are driving change

Duty to Warn: Anytime a healthcare professional is obligated to provide information and/or take action due to situational knowledge they possess

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

Pharmacist-Patient RelationshipForerunner of participatory medicineIs a voluntary act “upon which a trusting relationship is grounded”Process is patient initiatedEthical responsibility in pharmacy practice. 2002.

Which is MOST likely to establish legal pharmacist-patient relationship & duty to warn?Pharmacist contribution to entry on drug in WikipediaPharmacist posts on a social networking siteDiscussion of drug therapy on a pharmacist’s blogA series of podcasts voiced by one pharmacist

Legal Duty to Warn versus Ethical Obligation for Medical Advice

“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 aboveI don’t know

Ethics 2.0…from a Researcher’s Perspective

Virtual Informed Consent

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

What was the method used to obtain informed consent in the SL obesity study?No informed consent (IC) ethics board, or IRB involvement was describedAn object was created in SL that included a written IC form for participantsInterviewers used chat to inform participantsSubjects viewed a video detailing IC

What is the most ethically sound method to obtain IC in a virtual world?Create interactive video panel to review ICCreate immersive model to mimic study conditionsReview IC with subject via text chatReview IC with subject via voice chatGive subject an object with written IC to review

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

Questions?

ContactDr. Joan Dzenowagis | dzenowagisj@who.intDr. Kevin Clauson | clauson@nova.eduFrancisco Grajales | me@franciscograjales.com