Urowitz, S.From Social Networks to Social Medicine: Exploring the role of online interventions

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Medicine 2.0September 4, 2008

David Wiljer, PhD and Sara Urowitz, PhDPrincess Margaret Hospital/University Health Network;

University of Toronto.

From Social Networks to Social Medicine:From Social Networks to Social Medicine:

Exploring the role of online interventionsExploring the role of online interventions

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The Canadian Health Care System – The Canadian Health Care System –

Universal health care system

Providing health care for a large population

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The Canadian Health Care System – The Canadian Health Care System –

• Privately delivered– comprehensive coverage for medically

necessary hospital and physician services

• Publicly funded– Federal government– 10 Provinces– 3 Territories

Challenge: How to ensure sustainability?

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Empowerment ModelEmpowerment Model

Roberts, Health Expectations, 1999Roberts, Health Expectations, 1999

Individual/ Micro LevelIndividual/ Micro Level

Community /Community /Macro-LevelMacro-Level

Organizational /Organizational /Mediating LevelMediating Level

Psychological DomainsPsychological Domains• Self-esteemSelf-esteem• Individual competenciesIndividual competencies• Self-efficacy Self-efficacy

Collective DomainCollective Domain• Empowered membersEmpowered members• Political actionPolitical action• Redistribution of resourcesRedistribution of resources• Community decision-makingCommunity decision-making

Management DomainsManagement Domains• Shared decision-makingShared decision-making• Ability for individual to Ability for individual to

affect changeaffect change• Increase in “feelings of Increase in “feelings of

power”power”

6Adapted from Kreuter et al., 2000

Clinical Encounter

Experiential Health Information

General Health Information

Personal Health Information

Health Information: Chronic DiseaseHealth Information: Chronic Disease

Generic content

Individualized content

Level of Level of PersonalizationPersonalization

Level of Self-ManagementLevel of Self-Management Low High

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Experiential InformationExperiential Information

Matthew Hurst, 2008

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Experiential InformationExperiential Information

• Overcome the feeling of isolation. • Find similar patients who truly

experience the illness or condition. • Begin to network and become a more

significant stakeholder by informing “others in the system.”

Leonard, Wiljer et al. JHIT, 2008

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Caring Voices: Caring Voices: A National Initiative to A National Initiative to Support and ConnectSupport and Connect

Cancer SurvivorsCancer Survivors

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Why Caring VoicesWhy Caring Voices

• Caring Voices provides an alternative means Caring Voices provides an alternative means for providing and accessing supportive care for providing and accessing supportive care through:through:– Educational resourcesEducational resources– Regular monthly programmingRegular monthly programming– Online chats with experts and other survivorsOnline chats with experts and other survivors– Forums for posting questionsForums for posting questions– ““Friend” matching that provides opportunity to find Friend” matching that provides opportunity to find

people with similar experiencespeople with similar experiences

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Educational ResourcesEducational Resources

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Monthly Events CalendarMonthly Events Calendar

Chats: Real time CommunicationChats: Real time Communication(Survivor:Expert) (Survivor:Survivor(Survivor:Expert) (Survivor:Survivor))

• Average 9 monthly chats

• 35% led/moderated by clinicians– MDs (n=2)– Nurses (n=3)– Allied Health (n=4)

• Additional 24% led by experts in cancer community

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Forums: Asynchronous Forums: Asynchronous CommunicationCommunication

Forum Threads Created

17%

34%

25%

24%

Detection, Diagnosis &Treatment

Living w ith Cancer

Resource LibraryDiscussions:

What's New ?

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People MatchingPeople Matching

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Caring Voices Phase 2Caring Voices Phase 2

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Usability Results (n=8)Usability Results (n=8)

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Agree Neutral Disagree

Easy to use 85% 0% 14%

Liked appearance 86% 14% 0%

Easy to learn the site 86% 0% 14%

Easy to participate in forums

71% 14% 14%

Easy to participate in chats

71% 14% 14%

Receive support from other survivors

86% 14% 0%

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Cumulative Users

98191

261 284 330383

445 489 524575

645703

761845

922 9731046 1090

11471212

13091395

1469

0

200

400

600

800

1000

1200

1400

1600

Pre-L

aunch

Oct-06

Nov-06

Dec-06

Jan-

07

Feb-0

7

Mar-0

7

Apr-0

7

May-0

7

Jun-

07

Jul-0

7

Aug-0

7

Sep-0

7

Oct-07

Nov-07

Dec-07

Jan-

08

Feb-0

8

Mar-0

8

Apr-0

8

May-0

8

Jun-

08

Jul-0

8

Month

Use

rs

User GrowthUser Growth

An average of 49.5 new users An average of 49.5 new users register/monthregister/month

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Page Views and Sessions over Time

0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

Oct-06

Nov-06

Dec-06

Jan-07

Feb-07

Mar-07

Apr-07

May-07

Jun-07

Jul-07

Aug-07

Sep-07

Oct-07

Nov-07

Dec-07

Jan-08

Feb-08

Mar-08

Apr-08

May-08

Jun-08

Jul-08

Month

Ses

sion

s

0

50,000

100,000

150,000

200,000

250,000

300,000

350,000

400,000

450,000

500,000

Pag

e V

iew

s Total Sessions

Total Page Views

Web StatsWeb Stats

Number of VisitorsNumber of Visitors

24

44,146

71,188

0

10,000

20,000

30,000

40,000

50,000

60,000

70,000

80,000

Year

VisitorsVisitors Year Over Year

Oct 06 - Jun 07

Oct 07 - Jun08

61.3% 61.3% increase increase

in the in the number number

of visitorsof visitors

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Lymph Line Study

• To conduct a feasibility study using CaringVoices.ca to provide clinical education

• Gather preliminary data for a randomized control trial to examine the impact of this approach on the physical and emotional well-being of patients.

Funded by CBCRA

Study Consent

Assessment by

clinician

3) DASH

4) FACTB +SP

1) Complete questionnaires

2) Tour of Caring Voices

3) Schedule ~4 clinical visits (according to Standard of Care)

4) Follow-up appointment booked

5) DASH

6) FACTB +SP

Follow-up Appointment

Focus Groups

4 Online Educational

Sessions

1) Fluid Measure

2) Adherence to Care Plan

After Session 4:

2) DASH

3) FACTB+SP

>10% fluid volume

Lymph Line enrolment

Informed of Lymph Line study

If interested…

LymphLine ProtocolLymphLine Protocol

Funded by CBCRA

GYN GalsGYN Gals

• Feasibility study – Explore using CaringVoices.ca as a

platform to deliver group therapy• Women who suffer from distress resulting from

sexual dysfunction related to gynecological cancers

• 12 week intervention• Using education resources and forum postings• One live chat with MD and sex therapist

Classen et al. 2008

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ConclusionsConclusions

• Online communities– are an innovative option for providing

education and support– provide opportunities to support and

sustain social medicine using collaborative relationships

– can benefit and impact on how health care is delivered and researched

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Contact InformationContact Information

Sara Urowitz, PhDManager

Educational InformaticsPrincess Margaret HospitalSara.Urowitz@uhn.on.ca416.946.4501 ext. 3810

David Wiljer, PhDDirector

Knowledge Management and Innovation

Princess Margaret HospitalDavid.Wiljer@uhn.on.ca416.946.4501 ext 4703