Social interaction design

XVI.6 November + December 2009
Page: 6
Digital Citation

COVER STORY SUPPLEMENTProject Masiluleke


Authors:
Robert Fabricant

As the global war on HIV/AIDS continues to grow, there have been focused efforts in HIV-transmission prevention work and preventative intervention design and implementation in the developing world. However, domestic needs are also ever present and rising. In published remarks made during the 2009 National HIV Prevention Conference held in Atlanta, GA, Kathleen Sebelius, the U.S. Secretary of Health and Human Services, stated that “while we’ve made strides in Africa and around the world, our progress here in the US has stalled.”

Reflective of this stalled progress are recently observed upticks in domestic HIV infection rates, specifically across several demographic (risk) groups. During the conference plenary Dr. Amy Lansky of the CDC stated that overall, gay and bisexual men—commonly referred to as Men who have Sex with Men (MSM)—account for half of the new HIV infections in the US. Furthermore, within the MSM risk group, dramatic transmission rate increases have been observed among young (13-24) MSM and, specifically, young African-American MSM [1], with African-Americans,—disproportionally as a racial/ethnic group (inclusive of some alarming trends amongst African-American women)—accounting for nearly half of all new HIV infections.

Further elucidating domestic HIV/AIDS challenges, a March 2009 Washington Post article reported that at least 3 percent of the residents in the District of Columbia have HIV or AIDS. This rate rivals infection rates in parts of West Africa and exceeds the threshold that constitutes a “generalized and severe” epidemic. Although prevention—such as practicing safe sex behaviors—is the primary defense against HIV transmission, this trend in domestic infection rates is occurring despite the design and deployment of myriad HIV-prevention behavioral interventions, including computer technology–based designs. But opportunity does exist.

Influencing Behavior through Technology

Conceptually, the purpose of a behavioral intervention is to create “healthful behavior(s).” Examples of behavioral interventions range from education and training programs to behavioral modification therapies. Technology-based interventions use computers as the sole or primary medium of delivering the behavioral intervention.

As the sophistication of computing technologies and devices has grown, so has the proliferation of technology-based behavioral intervention designs. An entire chapter of the third edition (2009) of The Handbook of Health Behavior Change is dedicated to examining “e-health” strategies—“health services and information delivered or enhanced through the Internet and related technologies”—in promoting adherence to healthy behaviors [2]. Researchers are exploring the potential of these technologies, which are still evolving and being demonstrated in support of a number of health conditions.

The June 15, 2009, issue of TIME Magazine highlighted a study of the ALIVE! Intervention (A Lifestyle Intervention via Email), which demonstrates how simple email reminders can impact recipients’ eating and/or exercise behaviors. Similarly, after leveraging successes from an initial pilot program that explored the use of SMS messaging to remind patients with diabetes of their regular blood tests, Delaware Physicians Care, Inc. (DPCI) is now piloting an SMS system for pregnant patients. Through this system, enrolled patients receive reminders of their pre- and postnatal appointments along with messages that provide educational information. Early evidence reflecting the efficacy of this more novel use of the SMS medium, reported by DPCI, shows improved patient compliance with clinical guidelines that could eventually lead to better health outcomes, lower health care costs, and an enhanced quality of life for the patient.

Efforts by Intel Research have spawned the development of the UbiFit Garden. Part of the Everyday Behavioral Monitoring Project, the application is designed to foster regular physical activity through the use of mobile displays, on-body sensing, and journaling. As an individual performs physical activities, the UbiFit Garden application displays a blooming garden on the mobile phone screen. The number of flowers represents the user’s activity level for the week; the type of flowers displayed represents variations in routine; and if goals are met, butterflies appear on screen. The user wears a device that detects physical activity; the information is then manually added and edited using a journal application integrated into the mobile phone [3]. Results from field studies have demonstrated UbiFit Garden’s effectiveness in helping people maintain a more physically active lifestyle, and provide evidence validating the usefulness of design in supporting behavioral change [4].

Furthermore, as numerous mobile applications to support health-related behavioral change emerge, so is a cottage industry of sorts. The Apple iTunes mobile applications store now features a dedicated health care and fitness page, and many of the offered apps are designed to engender and/or promote healthful behaviors. Several of which were recently detailed in a September 10, 2009 New York Times article, “Training Apps That Help You Sweat the Details.” While apps can help an athlete achieve their personal best, the article notes that some physicians see the potential of these and like-minded apps in producing routines for the sedentary and obese, possibly improving health and driving down medical costs.


“HIV prevention is critical to control the epidemic…. Between 75 and 85 of every 100 HIV-positive adults have been infected through unprotected sexual intercourse…. Recent evidence shows that sustained, intensive behaviour change programmes promoting increased use of condoms, delayed sexual initiation and fewer sexual partners are reducing HIV incidence.” —United Nations Millennium

“Development Goals (MDGs) Fact Sheet (Goal 6) “We must also commit ourselves to fighting the HIV/AIDS epidemic by both reducing the number of HIV infections and providing care and support services to people living with HIV/AIDS across the United States.” —President Barack Obama, LGBT Pride Month, 2009 Proclamation

“As I said earlier, when it comes to HIV/AIDS in the US we have a choice. We can choose to get used to HIV/AIDS…to accept that it is a permanent feature of society…to be satisfied with lengthening lives instead of saving them. The President has taken the other path—to work to lower HIV incidence, to work to get all people living with HIV into care and improve their health outcomes and to work to end HIV-related health disparities.” —Kathleen Sebelius, U.S. Secretary of Health and Human Services

“In this country, we are doing a lot of things right, so we’re not starting from a point of failure. But we want to bring attention back to the domestic epidemic.” —Jeff Crowley, Director of the Office of National AIDS Policy at the White House

 


Although the empirical work in this area is in its infancy, the time is ripe for further exploration, which beckons for more active HCI involvement. The Society of Behavioral Medicine, in an effort to advance work in this area, has established the Behavioral Informatics Special Interest Group (SIG). As defined by the SIG, behavioral informatics is “the study of the use of technologies by patients and health care providers as well as the design, implementation, and evaluation of behavior change interventions delivered through advanced technologies.” Other venues, including the Health 2.0: User-Generated Healthcare Conference, are also catapulting this use of advanced technologies in connecting patients and providers. The October 2009 conference features tracks that highlight the “role of technology in living with a health condition and making the healthcare system more consumer-centric.” There is also the United Nation’s mHealth Alliance that is systemically examining the use of mobile technologies in facilitating global delivery innovations, along with addressing behavioral change.

The HCI community is part of this discourse. Several HCI-oriented events, including the recent Persuasive 2009 Conference and the upcoming Ubinutrituion 2009 (The Second International Symposium on Ubiquitous Computing Technologies for Nutrition and Public Health), featured or will feature dedicated sessions related to the design of technologies for engendering health-related behavioral change.

HCI and HIV

Specific to domestic HIV-transmission prevention, efforts are occurring and evidence is surfacing suggesting the efficacy of technology-based behavioral interventions in this arena. In a 2009 meta-analysis of technology-based HIV-prevention behavioral interventions, the authors find that these technology-enabled interventions have a level of efficacy that is similar to traditionally delivered interventions (via a human) with unique benefits that could potentially increase their effectiveness over legacy means in influencing behavioral change [5]. Among such benefits are: a lower cost in delivery; greater intervention fidelity (intervention is delivered as designed); and enhanced flexibility in dissemination means (e.g., delivery channels).

Though quite varied in design and implementation (but potentially effective), these technology-based interventions, conceptually, can take a number of forms, including [6]:

  • Individually tailored interventions. These interventions assess characteristics of individuals and provide tailored feedback to change those determinants. An example of such intervention is Keepin’ It Safe, designed through efforts at Columbia University’s School of Social Work, a one-session, individual-level intervention administered to adolescent females via computer. The primary outcome of the intervention is the increase in HIV/AIDS knowledge, protective attitudes, and risk-reducing self-efficacy.
  • Interactive video interventions. These interventions provide individuals an opportunity to make sexual decisions and observe the consequences of those decisions. Positive Choice: Interactive Video Doctor, developed at the Center for Health Improvement and Prevention Studies (CHIPS) at the University of California, San Francisco, is one such intervention. It is an individual-level, interactive computer-based intervention to improve screening and counseling about ongoing sex risk and substance use among HIV-positive patients.
  • Group-targeted interventions. Group-targeted interventions contain content that has been developed with a particular group in mind. SAHARA (Sistas Accessing HIV/AIDS Resources At-a-click), distributed by Sociometrics Corporation, is one such group-targeted, computer technology-based intervention. SAHARA is an interactive, computer-based intervention that is gender relevant and culturally sensitive for African-American women, ages 18 to 29. This intervention emphasizes ethnic and gender pride, HIV risk-reduction information, sexual negotiation skills, proper condom use, and development of partner norms supportive of consistent condom use. Social cognitive theory and the theory of gender and power provide the intervention’s theoretical foundation.

In light of these promising developments—discussed demographic trends in domestic transmission rates—and health care reform pressures to reduce delivery costs while increasing the quality of care, a perfect storm is brewing. An opportunity exists, catalyzed by more active HCI involvement, to more rigorously explore technology-based behavioral interventions, specifically mobile phone–based designs, in impacting domestic HIV transmissions rates.

“We are on the cusp of a persuasion revolution,” says B.J. Fogg, director of the Persuasive Technology Lab at Stanford University and author of Mobile Persuasion, and “mobile phones will soon become the most important platform for changing human behavior.” Fogg asserts that the mobile phone may represent one of the most “loved” and “personal” technologies. The mobile phone is a constant companion. Offering a level of interactivity rivaling that of a personal computer, the mobile phone has the ability to layer information into one’s life—moment by moment—in a way that could motivate and influence positive behavioral change.


“The most important platform in the world for collecting and delivering targeted and tailored health information during the first half of the 21st Century will be mobile phones. Mobile phones and integrated wireless devices will revolutionize the practice of public health and touch billions of lives around the world.” —Jay Bernhardt, director, National Center for National Health Marketing at the Centers for Disease Control and Prevention

“My takeaway message for the computer scientists here is there are some very interesting opportunities to collaborate with people solving big problems in the world, whether you’re interested in AIDS and medical problems…. There are a lot of opportunities there where you can make a difference.” —Joseph Konstan on human-computer interaction

 


Efforts to demonstrate this notion in the context of health care and specifically HIV transmission prevention are under way. The Texting 4 Health Conference hosted by the Stanford Persuasive Technology Lab highlighted several projects that demonstrate the efficacy of texting in changing sexual behaviors. These and similar initiatives that leverage the mobile phone to bring about sexual behavioral change were also recently illustrated in a May 2009 New York Times article, “When the Cellphone Teaches Sex Education.”

ISIS-Inc.org, one of the highlighted organizations and sponsor of the Sex::Tech Conference (an annual event that examines how technology can be used for STD/HIV prevention) focuses on the development of innovative strategies and high-tech solutions for sexual health education and STD/HIV prevention. This includes the design and deployment of sexual health promotion tools via mobile phones, the Internet, and PDAs. SexInfo is one such tool and represents an “active” sexual-health text-messaging program for youth in the San Francisco area. By texting a simple message, young people can find out what to do if a condom breaks, get help deciding if they’re ready for sex, and more.

In addition, work by Judith Cornelius and her interdisciplinary team at the University of North Carolina at Charlotte is providing an understanding of the feasibility of SMS augmented behavioral intervention in modifying sexual risk behaviors among African-American adolescents. This groundbreaking work has culminated in the development and current piloting of BART+TM (Becoming a Responsible Teen + Text Messaging) BART+TM uses text messaging to supplement and reinforce the messages and skills provided by the traditionally designed (i.e. delivery via interactive group discussions and role plays) BART curriculum [7].

While this evidence supports the potential of mobile phone–based HIV-prevention behavioral interventions, much work remains and beckons for more active HCI involvement. Surprisingly, given the nature of the fundamental design problem—engendering behavioral change—and the technological framing—mobile phones—little exists in the literature that reflects HCI involvement in this arena, especially in the context of domestic HIV-transmission-prevention efforts. A preliminary review of the applicable technology-based behavioral intervention literature (see Table 1) makes clear a role and need for HCI involvement both conceptually—the use of interactive technologies—and more specifically—mobile phone–based implementations.

Moreover, there is a lack of understanding of significant human-factors considerations (e.g., trust, privacy, social stigma, and ethics) that may affect this more novel use of the mobile phone [8]. Negative, unintended consequences of use and barriers to acceptance could reduce the efficacy of these sorts of interventions, unless those factors that impact use and acceptance are discerned and addressed: the HCI imperative.

But the challenge of domestic HIV prevention is not absent from the HCI radar screen. For example, groundbreaking work by Joseph Konstan and his interdisciplinary team at the University of Minnesota is providing an understanding of risk in MSM seeking sex in online venues. However, as reflected in the calls for additional work, the HCI community can contribute much more domestically, in advancing the use of interactive technologies and, specifically, mobile phones to influence and motivate appropriate HIV-prevention behaviors.

The role for HCI involvement in this arena is elucidating and actionable especially in the context of meeting the mounting challenges facing the health care community both domestically and globally. The need is dire. The time is right. The design and research questions are rich, and, above all, the potential for impact is great.

References

1. CDC Division of Adolescent and School Health “HIV/AIDS and Young Men Who Have Sex with Men.” http://www.cdc.gov/HealthyYouth/sexual-behaviors/pdf/hiv_fact-sheet_ymsm.pdf

2. Shumaker, S.A. The Handbook of Health Behavior Change. New York: Springer Publising Company, 2009.

3. Intel Labs Seattle. “Everyday Behavioral Monitoring.” http://seattle.intel-research.net/projects.php#ebm

4. Consolvo, S., McDonald, D. W., and Landay, J.A. “Theory-driven Design Strategies for Technologies that Support Behavior Change in Everyday Life.” In Proceedings of ACM CHI 2009 Conference on Human Factors in Computing Systems (2009): 405–414. Available online.

5. Noar, S.M., Black, H.G., and Pierce, L.B. “Efficacy of Computer Technology-Based HIV Prevention Interventions: A Meta-Analysis.” AIDS 23, 1 (2009): 107–115.

6. Rural Center for AIDS/STD Prevention. “Computer Technology-Based HIV Prevention Interventions.” http://www.indiana.edu/~aids/RCAPFact_Sheet_22r3lr.pdf

7. Cornelius, J.B. and St. Lawrence, J.S. “Receptivity of African American Adolescents to an HIV-Prevention Curriculum Enhanced by Text Messaging.” Journal for Specialists in Pediatric Nursing 14, no. 2 (2009): 123–131.

8. Patrick, K., Griswold, W.G., Raab, F., and Intille, S.S. “Health and the Mobile Phone,” American Journal of Preventive Medicine 35 (2008): 177–181.

9. Ybarra, M. and Bull, S.S. “Current Trends in Internet- and Cell Phone-Based HIV Prevention and Intervention Programs.” Current HIV/AIDS Reports 4 (2007): 201–207.

10. Noell, J. and Glasgow, R.E., “Interactive Technology Applications for Behavioral Counseling: Issues and Opportunities for Health Care Settings.” American Journal of Preventive Medicine 17 (1999): 269–274.

11. The Community Guide. “Research Gaps.” http://www.the-communityguide.org/hiv/supportingmaterials/RG-msm.html

Author

Woodrow W. Winchester, III is an assistant professor of industrial and systems engineering at Virginia Tech. A faculty affiliate of Virginia Tech’s Center for Human-Computer Interaction (CHCI), Winchester directs the Laboratory for User-Centric Innovation in Design (LUCID) and is the co-founder and a program coordinator of Building Interfaces for Tomorrow’s Technology: The Virginia Tech Research Experience for Undergraduates (REU) in Human-Computer Interaction, sponsored by the National Science Foundation. He received his B.S., M.S., and Ph.D. in industrial and systems engineering from North Carolina A&T State University, and is an alumnus of the fifth Convivio International Interaction Design Summer School, Napier University, Edinburgh, UK.

Footnotes

DOI: http://doi.acm.org/10.1145/1620693.1620696

Tables

UT1Table.

Sidebar: Project Masiluleke

Project Masiluleke is a breakthrough cross-sector collaboration that employs mobile technology as a high-impact, low-cost tool in the fight against HIV/AIDS and tuberculosis in South Africa. Masiluleke means “give wise counsel” and “lend a helping hand” in Zulu; the project was born of the desire to address tremendous suffering and premature loss of life, as well as the understanding that the ubiquity of mobile devices in many parts of the developing world has the potential to catalyze transformative social change.

South Africa has more HIV-positive citizens than any country in the world. In some provinces more than 40 percent of the population is infected. Ineffectual public communication campaigns and the social stigma associated with HIV/AIDS keep many from pursuing testing or treatment. Despite the widespread availability of HIV testing at all government clinics and free anti-retroviral (ARV) treatment, less than 5 percent of the population has been tested and knows their status. Only about 10 percent of those with AIDS, who qualify for ARVs, are currently receiving these lifesaving drugs. The majority of HIV-infected patients in South Africa seek care only after they become symptomatic with end-stage AIDS, at a time when they require the greatest resources and have the least likelihood of survival.

Project Masiluleke brings together a world-class coalition of organizations and domain experts (including frog design, Pop!Tech, iTeach, The Praekelt Foundation, MTN, and Nokia Siemens Networks) to test and scale up a powerful and integrated approach to fighting HIV/AIDS and tuberculosis, to leverage the power of mobile technologies to address the entire disease lifecycle. The project aims to raise widespread public awareness about accessing help; move people to take action resulting in their getting tested for HIV and tuberculosis; encourage those who test positive into treatment; and help them adhere to treatment plans that will extend their lives and reduce the human and economic losses associated with what would otherwise be certain and untimely death.

In October 2008, Project M launched a mobile HIV-awareness campaign using simple text messaging, which has tripled volume into the South African National AIDS HelpLine, inspiring more than 150,000 people to reach out for help. We are now working to build on this response and encourage people to take the next step: to test early and regularly and stay on treatment. Our initial research demonstrated strong demand for a convenient, safe, and simple way to self-test, particularly among men who are absent from the system. The design has been refined through a highly collaborative research process involving young men in a range of South African communities. This work culminated in a live test in which we recruited young men who did not know their status to test for the first time. All completed the test with varying levels of mobile support.

We are also piloting mobile services that provide reminders to stay on treatment and track follow-up appointments. All together, these services represent a complete, end-to-end, patient-centric model for mobile health delivery. The project was recently praised by The Economist as “the world’s biggest field trial of mobile health technology.”

Robert Fabricant / Frog Design
robert.fabricant@frogdesign.com

About the author: Robert Fabricant is the vice president of creative for frog design, where he works with a global team of strategists, interaction designers, industrial designers, and design researchers. He is charged with helping to extend frog’s capabilities into new markets and offerings such as healthcare and service design. He also leads frog’s Design for Impact initiatives, such as Project Masiluleke, that focus on transformative opportunities to use mobile technologies to increase access to information and accelerate positive behavior change. You can follow him on twitter@fabtweet.

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