- Aimee Roundtree – Chair
- Jennifer McClure – President the Society for New Communications Research (SNCR)
- Sylvia Chou – Programme Director in health informatics at National Cancer Institute
- Maryland Grier – sponsorship programme at Connecticut Health Foundation
- Gregg Beets – public relations co-ordinator for HIV/STD – Texas State Health
#minorityreport or #mrsxsw
Groundwork: Minorities use social media a lot (slide) all use them more than non-hispanic whites. Healthc are disparities persist in those communities. These matter both personally and societally as they ]lead to morbidity, lost productivity and disability. When communities of colour receive low quality of care as beneficiaries of publicly funded health programmes this has a cost in terms of everyone’s healthcare. Community matters in minority helath in awareness, engagement and health behaviours.- [2 slides] and probably matters in patient activation as well. There is active resistance and suspicion about care as well in minority populations.
Maryland Grier – We decided to act as a social agent for change when the Foundation was founded in 1991. Our priority areas children’s oral health, children’s mental health and racial and ethnic health disparities REHD.[this last is challenging].
We chose the REHD for our social media program. Our objective is to create public will to decrease REHD and strategy to use social media to reach across multiple, online community platforms to engage target audiences. Our Board was very concerned with return on investment, evaluation and measurement. We found those who are impacted most by health disparities are already using social media and that helped us get the programme adopted. How to partner with a charitable foundation [slide].
Jennifer McClure – Year One we worked on a baseline Survey of Connecticut residents and found that they use social media platforms (healthjusticeCT.org, FB, Twitter and Tweetchats) to talk about health conditions, insurance but not REHD. There was no awareness of these terms ‘health justice’ or ‘health inequity’ – used by policymakers and the healthcare community but not the population. Our most successful interactive activity that we started last year was tweetchats. We don’t have a lot of discussions yet but the basis is there for year 2.
We share data on the Twitter feed but it doesn’t inspire conversation but is good for data sharing. We integrate our channels as much as possible – our blog posts on the site are cross-referenced to FB and Twitter. We also use FB Connect on the site.
We appointed our Fellows as moderators for the Tweetchats, invited attendees using Eventbrite and the reach was enormous 63,000 people were reached by 210 tweets. LifetimeHealthDiary was actually on that tweet chat – we picked it up via our involvement in #HPM tweetchat (Healthcare and Palliative Medicine).
What we realised – REHD is hard to talk about because it affects so many things – it’s healthcare related, community related e.g. if your community shop doesn’t sell fresh fruit and vegetables, Moving forward – we have some momentum but we need a person on the ground – she’s hired now Cambodian refugee who is also a community health worker who has a huge network on the ground. Integrating online and offline is important vehicle for the programme. We are running a $10,000 prize to encourage innovative solutions. Slides on HealthJusticeCT.org
Gregg Beets – We are working to reduce the disease burden. Accessibility is a big concern for state government funded programmes as is privacy. Social media sites have people violating their own HIPAA rights by publishing online. Our first ‘baby step’ into social media was including SMS as part of our Fight HIV campaign. We didn’t have great traction we got about 120 texts and it didn’t cost us a lot. At that time 2007 we didn’t get pick up and we found later that many people had pay per text phone plans so it cost them up to 25cents to send – which was a barrier which is now lower.
More recently we worked with Kaiser Family Foundation on their Greater than > AIDS campaign which is about confronting the stigma around the disease. They have great partnerships with CBS and NBA and Walgreen Drug Store . The social media elements allowed the campaign to drill down to the personal level. The campaign has over 80,000 friends and many people have shared stories – we used the San Antonio Spurs game last week to promote the game and by the ned it was a trending Twitter topic.
Newly we have started with self notification of partners. We use inSPOT’s free e-cards (an easy way to tell them you have an STD) to help people identify their sex partners who can be told about STD identification mainly for gonorrhea and chlamydia. The anonymity means there’s not a lot of data to prove ROI. [slide]..
Wen-Ying Sylvia Chou – I specialise in cancer communication using social media. paper 2009 Social Media User in US: Implications for health communication Journal Medical Internet Res, 1(4). HINTS survey is Health Information National Trends Survey. Also current Health-related Internet Use among Cancer Survivors paper. Survey showed 16% have used email to communicate with providors, 23% online Rx purchases. [slide].
She showed a heap of great slides which I’ll get linked to later.The implications are that enabling equal access to the internet is important. Social media use motivations are very different from health information motivations. The function of social media is not the same as health information searches. For implementing social media communication efforts – identifying the needs of a target population is key.
Aimee Roundtree – I do content analysis of social media health discussions including advocacy groups. On Twitter people share information about what we eat, how we exercise, body image, general health information. FB may have potential for healthcare decisionmaking – but it’s not happening yet. [slide] But FB users are closely identified with their community members and the community values are reflected in FB use patterns and beliefs. They are also active in healthcare decision making but not yet using FB as the communications medium.
Minority Health Advocacy Groups mostly use FB like old media for sharing studies and findings, promoting events, flyers and government actions. Only a few use social media for activsm and community organising – petitions, rallies.
Recommendations for using social media to engage ommunities of colour –
- write like a friend,
- target patient navigators rather than patients,
- share narratives and profiles more than facts and figures,
- allow your followers to share content as much as you do,
- start from leverl of engagement then scaffold to new behaviour.