A brief history of e-Public Health approaches to online HIV prevention

1. A brief history of e-Public Health approaches to online HIV prevention B. R. Simon Rosser, PhD, MPH, LP Professor and Director HIV/STI Intervention & Prevention Studies (HIPS) Program, Division Epidemiology & Community Health, University of Minnesota School of Public Health. Presentation based on: Men’s INTernet studies I and II

2. Our Common Challenge: To develop effective e-public health interventions My Strategy: To review online interventions for HIV prevention so we can see advances made in one area of public health, to possibly get ideas about approaches, their advantages and disadvantages. Caveat: This review is based on research-based studies where the goal is to develop “feasible” and “fundable” research-based intervention. Hence these are typically ideas that can be conducted in 2-3 year or 4-5 year timelines corresponding to NIH grants.

3. This unit’s principle of good design • Realize there is no perfect intervention in the real world. • All interventions have advantages and disadvantages • A strong intervention shows a good fit between objectives, goals, theory and methods.

4. First decision: • A. Study what is in existence? • B. Research what is possible? Do I

5. First decision: • A. Study the what is in existence? • easier, • more doable first step • plenty to do • Lends itself more to R21, R34 • B. Research what is possible? • More exciting • A lot more expensive, complex, therefore more competence expected • More skepticism but possibly more innovative • Lends itself more to R01s Do I

6. First decision: • A. Study what is in existence? • 1. information / health websites • 2. outreach in chatrooms (human-to-human) • 3. evaluate state-of-the-art sites • B. Research what is possible? • 5. 1st generation: translations • 6. 2nd generation: translations with bells and whistles • 7. 3rd generation: hybrids • 8. 4th generation: next generation Do I

7. 1. Evaluate existing sites to identify potential ways to improve a health website • Is the information accurate? • Is the information presented in way that communicates effectively? • Is the information what the target audience most needs to know? • Is it likely to be effective? • What is the likely outcome of this website? Note: In e-PH studies, the interesting questions are often different from those in offline or traditional HIV prevention and come more from informatics, e-learning, and e-communication.

8. Best practices strategies • Good practice: Put yourself in the “shoes” of a high risk person. • Ask what that person most needs to know to protect their health? • Test search sites for answers.

9. Exercise • Men who have sex with men comprise >50% of all new HIV infections in the USA. • Unprotected anal sex is the #1 way 95-99% of HIV is transmitted in this population. • Virtual risk: Men who use the Internet to seek Sex with Men (MISM) are at increased risk for STDs and HIV. • Imagine you’re an MISM. Search the nation’s leading health site to find out how to decrease your risk. • [Who is the expert? Go to cdc.gov]

11. Evaluation • What do you like or dislike about this site?

12. Potential areas of study • Is the information accurate? No. Sexual abstinence has a high failure rate (90%+) so the #1 recommendation is false. • Is the information presented in way that communicates effectively? • Too much text, • no visuals, no white space, • reading level set too high. • Is this the information the target audience wants? No. • Is it likely to be effective? No. • So, what is the likely outcome of this website? Turn people off HIV websites.

13. In the last 12 months, which of the following have you used to get information about MSM, HIV, STD & sexual health? N % • Internet search engines 2,193 76 • Gay web sites 1,926 67 • Internet health sites 1,604 56 • Bulletin boards/blogs 867 30 • Government sites (CDC) 830 29 • Media sites (NY Times) 610 21 • Health insurance 380 13 • Email health provider 275 10

14. In the last 12 months, which of the following have you used to get information about MSM, HIV, STD & sexual health? N % • Internet search engines 2,193 76 • Gay web sites 1,926 67 • Internet health sites 1,604 56 • Bulletin boards/blogs 867 30 • Government sites (CDC) 830 29 • Media sites (NY Times) 610 21 • Health insurance 380 13 • Email health provider 275 10 Interpretation: 29% of MSM at greatest risk use the top agency’s website = Lower than President Bush’s approval ratings (30s) but higher than FEMA’s ratings after Katrina (10s).

15. 2. Individual outreach • Exercise: Early in the HIV epidemic some of the most effective education was by peer educators going into high risk environments (e.g. gay bars, bathhouses) • FFI: see Jeff Keey, Peer Opinion Leader studies • What would be the online equivalent?

16. 2. Outreach in chatrooms Advantages: • The outreach workers swear it works • Personal, individualized, confidential. • Anecdotal cases where it’s helpful. Disadvantages • Labor intensive (1st generation) • Theoretically weak • Unlikely to last. Can you really staff a site to answer in person the world’s questions? • In several sites, not permitted so it’s a mute point. • But an online POL project could be interesting to quantify its effects.

17. 3. Evlauate state of the art sites • Go tohttp://www.dph.sf.ca.us/stcityclinic/drk/advicebytopic.asp • Ask the same or similar question (e.g., oral or anal sex risk)

18. Evaluate • What do you like or dislike about this site?

19. 3. Evaluation of cutting edge websites, e.g. Ask Dr. K*? Advantages: • Learner oriented so much more popular. • Language more user friendly • Study what people are doing and reporting helpful. Disadvantage: • Very labor intensive designing answers to questions

20. The second option: Researching/designing what is possibleKeep in mind the standard is behavior change.

21. Internet time is much faster • An offline generation is 25 years. • An Internet generation is 18 months. • It is extremely hard to build something that is not out of date before you have tested it.

22. 4. 1st generation: translations • These types of applications treat the Internet as a new environment and seek to see whether effective techniques offline work online. • E.g., email counseling. • Is it as effective as face-to-face counseling? • Can online counseling be shown to be effective?

23. Advantages and disadvantages • Some environmental translation analysis needs to be done. But: • The offline interventions are tired. • Rules governing online communication prohibit direct translation. • Direct translation is very text heavy and boring.

24. 2nd Generation: Hybrids • Here, some use of Internet technology is used to transfer process as well as content. • E.g. synchronous chat for small group work. • E.g., email the expert for talk to an expert. • E.g., webcam for that personalized touch.

25. Advantages and Disadvantages • Not all processes translate, making equivalent interventions challenging. • Issues of bandwidth, and other logistics have complex implications for who has access, how current it appears. • For online/offline hybrids, chaining efficient online methods to inefficient offline methods is a mistake. You need to match.

26. 7. 3rd Generation: Online CBT • Other areas of Public Health are showing promising results taking standard cognitive-behavioral interventions and developing computerized tools or Internet support for them.

27. 8. Building and testing “next generation” interventions. • Go to: • http//:gaycruise.net.design.nl

28. Use of avatars and simulations is one controversial strategy Include 3.wmp (sound is inbeded using wmp)

29. Advantages & Disadvantages Avatars: • They can be easily re-audioed and up-dated, look fun and cute. • The initial data base dump has to be huge, and some people just don’t like fake men. • Scientists have been trying since the 1950’s to make A.I. real. Simulations: • Can also be fun and novel. • Inherently they increase situational cues of artificiality which can lead to unintended negative consequences.

30. Next Generation Internet based interventions • Need to “un-learn”: let go of traditional HIV prevention methods and assumptions. • Develop new interventions that play to the strengths of the Internet. • Need to be state-of-the-art in both HIV prevention and e-communication.

31. Needs strong E-learning and HIV prevention theory integrated E-learning Objectives • Interactive • Fun • Effective Learning environments • HIV prevention Objectives • address online risk • empirically based curricula • new approaches for MSM Highly interactive, effective Online HIV prevention curricula for Men who use the Internet to seek Sex with Men (MISM)

32. Respect Internet communication An ancient learning principle rediscovered: In highly interactive, online interventions, people learn experientially in the environment. “What we learn, we learn by doing.” Aristotle

33. Build virtual community • Build people: The HIV prevention community is doing an incredible disservice to online communities when it only sees them in terms of risk behavior, and risk vectors. • Do no harm: No other community would tolerate media characterization of internet communities and environments as “evil”: • Characterizing their homes as risky places • Stereotyping the population as lying, dangerous monsters • Seeing only their sexual behavior as bad.

34. How are online interventions different? 8 e-principles guide our work • 1. Nothing gets built that is boring.No preaching. • 2. Respect internet time. No intervention > 5 minutes. • 3. Respect individual styles of learning. Each learner should be able to go where he wants, when he wants, and how he wants (e.g. choose his own level of explicitness). • 4. Be challenging. Encourage self-reflection and growth. • 5. Be reinforcing. It’s got to be cool, fun, and intrinsically rewarding. • 6. Be experiential. Build sex-based skills. • 7. Be community centered. Create a vibrant community (populated with REAL individuals) worth visiting repeatedly. • 8. Build skills.(to increase the likelihood MISM group members will choose safer sex activities).

35. The ultimate challenge… to build a world online of HIV prevention that is so engaging, fun and effective… you can’t resist being there!

36. Online intervention applications need to present a credible intervention development plan. For example, we use a structured approach using 3 levels of rapid prototyping called SAVVY. This produces Level 1 Prototypes: Brief mock-ups, often using stick figures, fake or “placement” content, simply to convey the immediate idea/experience. Key challenge: Is it fun, engaging, interesting…does it pass our principles?

37. Welcome to our town…

38. Part of building effective interventions is testing them After modules are developed, by partnering with computer science, we undertake usability laboratory studies where we can: • Webcam subjects’ verbal and on-screen reactions • Monitor eye tracking to assess what is most being attended to. • Qualitatively observe to assess acceptability and interest Later in the course we will site visit the lab A subject in the Lab Monitoring the subject’s reactions In a separate conference room

39. Any intervention needs an appropriate rigorous trial Recruit 515 Subjects from 3,750 (14%) MISM in Protocol I over-sampling those at greatest risk; baseline tested again R Pilot Subjects (N=15) Intervention Subjects (n=250 recruited to retain At least 80%, n=200) Control subjects (n=250 recruited to retain at least 80%, n=200) Complete all modules (8 hrs, receive $100) Read HIV prevention websites (8 hrs, $100) Retention study using raffles 3-mo, 6-mo, 12-mo online follow-up surveys ($10 per survey plus $15 bonus)

40. Questions to ask? • How many online interventions do we need for the world wide web? • How many studies should be funded before results are required? • There is great wisdom is doing some small steps well then building upon them. • Biggest mistake in Internet applications: Not appreciating the power and the difficulties associated with being Internet based.

41. Summary In this unit, we: • Reviewed a primary prevention area • Evaluated e-Public Health sites • Examined historical developments in ePH • Searched sites for ideas and strategies

42. Discussion

43. HIV/STI Intervention and Prevention Studies Program Division of Epidemiology & Community Health School of Public Health University of Minnesota 1300 South 2nd Street, Minneapolis, MN 55454 Phone: (612) 625-1500. Email: rosse001@umn.edu HIPS Program