The pathogenesis of persistent HIV-associated inflammation during long-term antiretroviral therapy
Social Media and HIV Research (long)
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Social media & HIV research Presented by Melanie Kuxdorf May 3, 2012 www.hivnet.ubc.ca
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Explains social media platforms; how patients, researchers & physicians are using social media; and presents the CTN study CHIWOS: our first study to have a social media strategy and ethics approval.
Transcript of Social Media and HIV Research (long)
Social media & HIV researchPresented by Melanie KuxdorfMay 3, 2012
www.hivnet.ubc.ca
www.hivnet.ubc.ca
Follow @CIHR_CTN
Social Media & HIV Research
Overview:•What is social media?•Who’s using social media for health?•Pitfalls •Benefits•Best Practices•CHIWOS: case study
www.hivnet.ubc.ca
Follow @CIHR_CTN
What is social media?
“Social media is the use of technology combined with social interaction to collaborate, create and share.”
~ Colleen YoungColleenYoung.com
www.hivnet.ubc.ca
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Stats
• Facebook has over 800 million active users. Half sign on every day.
• Twitter has over 200 million users and grows by 500,000 every day.
• YouTube is the 3rd most trafficked website in the world, after Google and Facebook.
www.hivnet.ubc.ca
Follow @CIHR_CTN
What are you using?
www.hivnet.ubc.ca
• Style: Friend- & community-based• Privacy:
• Page = public • Group = members • Personal account = based on privacy settings
• Frequency: Daily• Content: ~1-4 sentences, + videos, photos,
links, text• Interaction: liking, commenting, sharing posts
www.hivnet.ubc.ca
Blogging
• Style: personal point of view • Frequency: weekly• Content: longer form (100-300 words)
text, w/images, links, videos• Interaction: comments, keyword tags
make searchable
www.hivnet.ubc.ca
www.hivnet.ubc.ca
• Style: professional network• Frequency: update profile as needed• Content: CV-style information; give and
receive recommendations• Interaction: join groups and discussions
www.hivnet.ubc.ca
YouTube
• Style: broadcast one to many; general public• Frequency: ~once a month or more• Content: videos• Interaction: sharing videos, commenting,
liking, subscribing to channels
www.hivnet.ubc.ca
• Style: idea- & topic-based• Privacy: public • Frequency: several times/day• Content: <140 characters, often w/links• Interaction: reposting (retweeting) or
directing tweets i.e. @CIHR_CTN
www.hivnet.ubc.ca
Twitter Chat
• Hashtag #HCSMCA• Follow @HCSMCA• Health Care Social Media Canada• Wednesdays at 10am
www.hivnet.ubc.ca
www.hivnet.ubc.ca
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www.hivnet.ubc.ca
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Social Media & Patients• 61% of American Adults get health info
online= 80% of all Internet users • Nearly ¼ of people with chronic
conditions seek peer-to-peer help* • Epatient: a person engaged in their own &
others’ healthcare online• 60% consume social media• 29% contribute content **• are 60% more likely to participate in
clinical research***
* http://www.chcf.org/publications/2011/02/health-topics-internet-users-information** PewInternet.org http://ow.ly/acg5u*** bluechipmarketingworldwide.com PDF: http://ow.ly/acfXL
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Digital Divide Narrowing
PewInternet.org http://ow.ly/acg5u
www.hivnet.ubc.ca
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Social Media & Vulnerable Populations
• Women• 61% of Epatients are women between ages of 35-54
• Aboriginal people• Can connect rural communities “Facebook instead of phone calling
cards” (see CBC Spark’s Arctic Internet story)• Broadband still a concern (esp. in north), but increasing (
Nunavut Broadband)
• People insecurely housed • Access through community centres
* bluechipmarketingworldwide.com PDF: http://ow.ly/acfXL
www.hivnet.ubc.ca
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Social Media & Vulnerable populations
“No one has email but everyone has a Facebook account”
www.hivnet.ubc.ca
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Health Providers & Social Media
Physicians in Canada•1% on Facebook professionally •11% on Twitter•19% blog•22% on other social media sites
80% think social media poses risks
* CMA e-panel survey 2010 (non-randomized) For a survey of scientists see here
www.hivnet.ubc.ca
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What’s Stopping Us:
• Privacy Concerns• Patient confidentiality• Study info confidentiality• Personal/Professional separation
• Ethics approval• Time and money• Unpaid work in some cases• Too busy for social media
• Lack of knowledge• Lack of proven clinical benefit
www.hivnet.ubc.ca
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Benefits of Social Media: For Health Care Pros
• Keep up with latest research • Monitor health trends• Improve and correct online info• Deliver public health messages
www.hivnet.ubc.ca
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Benefits of Social Media: For Orgs
• Connect with community• Knowledge Translation• Conduct research online• Boost study recruitment & retention• Increase transparency and trust• Receive feedback (allows collaboration
for community-based research)
www.hivnet.ubc.ca
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Best Practices for Health Providers• Privacy and Professionalism:• Personal profiles (i.e. Facebook profiles)
• Keep strict privacy setting• Don’t friend your participants or patients• Don’t post info that could identify participants or patients
• Public profiles (i.e. Twitter, Facebook pages, LinkedIn)• This is a public forum, and a permanent record: act accordingly• Don’t break copyright
Follow CMA Guidelines
• Interact• Not a soapbox: to be successful engage with and respond to your community
• Have fun• Social media is supposed to be just that: social
www.hivnet.ubc.ca
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Best Practices for Orgs• Know your audience and go where they are• Not everyone will benefit from social media, most suited for:
• Groups looking for feedback and discussion• Concepts that can engage a community• Groups with staff able to spend ~15 minutes per work day with social media accounts
• Be strategic• Choose the best platforms for your group and your staff
• Share (don’t just broadcast)• Post thoughts and findings from others about the topic• Championing others on social media has a symbiotic effect
• Create a social media policy (policytool.net)• be clear about what you’re doing, and why
www.hivnet.ubc.ca
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Remember:
Social media is newEVERYONE is learning
www.hivnet.ubc.ca
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Case Study: CHIWOS
• CHIWOS is CTN’s Canada-wide study designed to assess health service disparities for women living with HIV
www.hivnet.ubc.ca
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Case Study: CHIWOS
• CHIWOS: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study
• The CTN’s CHIWOS study is on Twitter
• Our first study to have social media strategy & get ethics approval
www.hivnet.ubc.ca
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Case Study: CHIWOS
“It will bring community members, researchers and service-providers together to learn from HIV-positive women about the challenges we face in accessing care,”
~ Shari Margolese (CHIWOS peer research coordinator and member of CTN’s Community Advisory Committee)
• Led by Drs:• Mona Loutfy (Women’s College Hospital in Toronto)• Robert Hogg (BC Centre for Excellence in HIV/AIDS)
• Angela Kaida (Simon Fraser University)• Alexandra de Pokomandy (Montreal Chest Institute)
• + 29 co-investigators and 25 community collaborators
www.hivnet.ubc.ca
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• Ethics Board concerned about:• Privacy of participants (no sharing of personal info)• Who has access to accounts• Accounts password protected• Provide email so no one would publicly ask to participate
in the study
• What to show the Ethics Board• Social Media Policy• Similar to your website• Be explicit about your use of social media• Describe why you want to use it• Give example posts• Screen shots (photos) of social media pages
Case Study: CHIWOS
www.hivnet.ubc.ca
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CHIWOS Social Media Policy
“CHIWOS social media contributors are allowed to use social media for the following purposes: • To provide basic information about the study to the public. • To share publically available news or journal articles pertaining to HIV and women’s health.• To post photos or videos relevant to the project’s topical focus… Official video or photo
release documentation must be received from all identifiable CHIWOS individuals before posting any videos or photos.
• To share research activities, including opportunities for participation in the study. Such notices will direct potentially interested participants to contact Provincial Coordinators directly via email or phone.”
www.hivnet.ubc.ca
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CHIWOS Social Media Policy
“Protecting the privacy of CHIWOS and its team members, partners and participants:While it's perfectly acceptable to talk about the study and have a dialog with the community, CHIWOS social media contributors are prohibited from publishing confidential information. Confidential information includes things such as unpublished details about our research and data as well private and personal information about CHIWOS team members, partners and participants.”
www.hivnet.ubc.ca
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Your Network
Ask:
•Who is in your community?
•Who do you learn from?
•Who or what do you want to influence? …and why?
www.hivnet.ubc.ca
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Resources:• Aids.gov: everything you need to know about new media• CMA social media policy• A Primer on Blogs, Wikis, & Twitter (from UBC & Cochrane Canada
Symposium Workshop 2011) • Mayo Clinic Center for Social Media• Social Media For Social Good (book and blog)• #HCSMCA (Health Care Social Media Canada) Twitter Chat • #HCSMCA founder Colleen Young’s presentation: Clinician Peer Support
Network: Social networking online• Free social media policy creator at policytool.net• ...and me: [email protected] or on Twitter @melkux
