Using social media to find and share health information
CONSUMER HEALTH 2.0
Elisheba Muturi, MLIS Daniel Hooker, MLIS
Patient Voices Network Forum
April 16, 2011
Daniel Hooker (@danhooker) Health librarian Researcher, UBC eHealth Strategy Office
Interested in social media, health communication
Elisheba Muturi (@shebamuturi) Health librarian Program Analyst, BC Ministry of Health Services
Interested in health literacy, patient activation
WHO WE ARE
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Introductions ‘ePatient’ video (7 mins) Group discussion (5-10 mins) Talk on ‘consumer health’ and social media
(20-25 mins) Scenario exercise (20 min) Wrap-up, questions
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AGENDA FOR THE DAY
Find health information on the web
Encourage evaluation of health information found when using social media
Discover new consumer health websites, and social media of value to Canadians
See new ways of using the Internet to communicate and share information
Develop skills in using (Appreciate the value of?) websites and social media to stay informed
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GOALS FOR THE DAY
Find health information on the web
Encourage evaluation of health information found when using social media
Discover new consumer health websites, and social media of value to Canadians
See new ways of using the Internet to communicate and share information
Develop skills in using websites and social media to stay informed and build a trusted patient network
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GOALS FOR THE DAY
VIDEO
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http://www.youtube.com/watch?v=9ebdGR3IZp8
A Tale of Two e-Patients – Dr. Val Jones (@DrVal) e-Patient Connections 2009 What did Megan, the patient who got better, do right?
What were her obstacles?
Where did Julie, the patient who didn’t make it, go wrong? What could she have done differently?
What lessons do we learn from Megan and Julie’s cases?
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VIDEO REFLECTIONS
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DEFINITIONS: Consumer Health Information
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DEFINITIONS: Consumer Health 2.0
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DEFINITIONS: Health Literacy
HEALTH LITERACY IN BC
Health region Sub-optimal Proportion
Northwest 61% Richmond 61% Okanagan 59% Thompson/Cariboo 58% Fraser South 58% Vancouver 56% Fraser East 55% British Columbia 54% North Vancouver Island 53% Fraser North 54% North Shore/Coast Garibaldi 53% Central Vancouver Island 50% East Kootenay 49% Kootenay/Boundary 48% South Vancouver Island 46% Northern Interior 45%
Source: International Adult Literacy Skills Survey, 2003 - Compiled by CCL
Sub-optimal Proportion
Aboriginal 66.3% +/-8.4%
Non Aboriginal 53.2% +/-1.8%
56-65 years 60.0%
Over 65 years 78.9%
Non-Immigrant 45.9%
Immigrant 71.9%
Employed 44.8%
Not employed 67.9%
Basic skills for understanding information
Interactive skills for personalizing and making sense of information
Reflective skills to apply information in context and think critically
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LEVELS OF HEALTH LITERACY SKILLS
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CONSUMER HEALTH BY THE NUMBERS
66% of internet users look online for information about a specific disease or medical problem.
56% of internet users look online for information about a certain medical treatment or procedure.
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CONSUMER HEALTH BY THE NUMBERS
60% of e-patients access user-generated content related to health
20% of e-patients post or share content.
(Only) 3% of e-patients, say they or someone they know has been harmed by online information.
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CONSUMER HEALTH 2.0 BY THE NUMBERS
95% (19 out of 20) of respondents to our pre-survey begin their searches on:
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WHAT YOU SAID
CONSIDER CUSTOM SEARCH ENGINES
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“It is difficult to know where to turn and who to trust...
“What is reputable any more?”
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WHAT YOU SAID
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(E-)PATIENTS LIKE ME
“Patients know what other patients want to know”
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CONSUMER HEALTH 2.0: Patient Blogs
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CONSUMER HEALTH 2.0: Patient Communities
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PATIENT NETWORKS COMPLEMENT
“Electronic support communities appear to be best at what doctors are worst at and worst at what doctors are best at.”
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CONSUMER HEALTH 2.0: Health Organizations
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WHAT’S THE PROBLEM, THEN?
“The majority of participants posted only once, but of the 9% who posted three or more times, 30% were clearly promoting products, and 3% of the promotional posts contained inappropriate… therapeutic claims.”
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WHAT’S THE PROBLEM, THEN?
“Several links to a ‘Toothless Fish’ that eats skin and will cure your eczema. Seriously.”
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WHAT’S THE PROBLEM, THEN?
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WHAT IS RELIABLE?
Authority
Complementarity
Confidentiality
Attribution
Justifiability
Transparency
Financial disclosure
Advertising
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CAN YOU TRUST CONSUMER GENERATED CONTENT?
Social media tools offer excellent opportunities for consumers to participate actively in their health, to learn and to contribute to key conversations.
Online communities are extremely valuable – they complement rather than replace relationships with health professionals.
Your participation in Consumer Health 2.0 doesn’t just benefit your health, it contributes to a network of informed, activated patients who can help others and help to change health care.
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SUMMARY
Questions?
Elisheba Muturi - [email protected] Daniel Hooker - [email protected]
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THANK YOU FOR SHARING
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