As part of the start-up team for Revolution Health, a major new health website, we were interested in exploring how we could leverage the dynamic world of social networking to a great cause—better health. This makes sense for several reasons: illness is scary, and social networking can provide targeted support. Making positive changes in your health is hard to do, and it’s helpful to know you’re not alone.
However, health information is intensely personal. Would people be willing to share details about their personal health situation with total strangers? And if so, what are they willing to share, and what do they consider too personal?
We wanted to uncover the real value of personal profiles for the health community, how they might be used by real people, and what we could do to make them more likely to be used, and, as a result, more successful in building a critical mass of participants—a crucial component of successful community sites.
Our goal was to create an area within Revolution Health for people to share their health information and experiences to facilitate connections and knowledge exchange. We assumed people would be thrilled to finally have a place to connect, share, and learn about matters of health and illness.
To validate our thought process, we set up paper prototype testing to see how our early profile designs might be used by people in different states of health. This also helped us understand what would motivate people to use a personal health profile, and what should change to make profiles more useful and desirable. To create a successful community-focused site, there must be a critical mass of activity—we wanted to ensure profiles would be valuable to our site users.
When we showed participants the concept prototype, we heard the following comments:
- “Is this a dating site?”
- “Why would I create a profile—my health is fine.”
- “I’m not in a position to give advice yet.” (“I might if I had something to say.”)
These responses were bad news for us at Revolution Health.
Why were users confused? These were good designs because the design team took inspiration from some of the best social networking user profile examples on the Web. We screened participants for health history and their tendency to engage in online community activities (even though many were over thirty-five). In effect, we chose participants who were more comfortable with online community tools than a typical Revolution Health user might be.
However, the participants’ unexpected responses were based on a conflict between the way people have traditionally experienced medical resources, what personal health information means in the context of the online environment, and how we make friends on the World Wide Web.
Now that social networking sites are everywhere, there is an unconscious cultural understanding around personal profiles. Web 2.0 profiles have a lot of innovative ways to help people interact, but users can find these tools threatening when using them to provide intimate information about one’s health.
The participant response patterns we found during this prototype testing revealed a relationship between our key user types (see Figure 1), and a conceptual model developed in previous research at Revolution. This model, called the Arc of Needs, describes processes or phases that people follow through a life-changing health event. (See Figure 2.)
Each of our user types, with their unique behavior and attitude toward their own health and their tendency to be at a predictable point on the Arc of Needs, had a different response to the online health profile prototype.
Here’s what we learned about each user type:
- The Newly Diagnosed user-type is not ready to share information about him/herself. They are scared and find themselves in a steep learning curve. They want to find and read the profiles of others who are in the same situation so they can learn about how others are managing the same diagnosis. They do not want to create their own profiles yet. They focus on finding the information they need, and assess profiles based on whether the profile owner can help them improve their situation. Once they have moved into the Coping zone of the Arc of Needs, they still don’t believe they can advise others. They view profiles as the domain of people who are far along in their health journey.
- The Living With user-type (those seasoned individuals who have mastered their disease state) is expected to shoulder the creation of profiles and provide mentorship to those earlier in their learning curve. They view themselves as ready to provide leadership and approve of the profiles as a venue to help others.
- The Health Enthusiasts, who have a heightened consciousness about exercise and nutrition, see profiles as beneficial for sick people. “I’m not sick, so why would I create a profile?” Revolution Health’s goals included attracting Health Enthusiasts, not only people with health concerns. However, we found that if this user-type wanted a profile focused on their preferred sport or dietary convictions, they felt it would be more appropriate to create it on a niche website dedicated to that one topic, versus creating it on a general health website. For example, a dedicated runner we spoke with said she would rather develop a profile on a site focused on runners.
We also identified the following general attitudes:
- A mercenary attitude prevails when evaluating someone’s profile.
Users look for signs that tell them the profile owner is a good prospective resource for relevant health information.
- Information first, relationships second.
The user connects to another user (through their profile) to get information or advice. The human-social connection is frequently a positive by-product after meeting the primary goal of getting useful information. Even those specifically seeking to develop a support network evaluate profiles based on how useful or relevant another user’s experience will be to their own.
- Personal information irrelevant to a health condition signals “dating”.
Participants felt that the testing prototypes were suspiciously general—there wasn’t enough focus on a specific health issue, and there was a strong assumption that the profiles would center on ailments, disease, or struggles—despite the goal to also appeal to people in fine health. One profile described several favorite activities like “bicycling in the park and reading good books.” The intimacy of knowing someone’s interests or preferences outside the sphere of medical health suggested a possible social or romantic purpose, which negatively affected participants. It also indicated that users expected health profiles to be serious, medically-oriented tools that should not have the light-hearted feel of a dating or friendship-oriented profile. Because users are potentially dealing with life and death health issues, profiles shouldn’t be frivolous or cute.
Our findings identified two design objectives that a personal profile on a health site must meet:
Focus profiles on health issues at first glance. Visually, health-focused profiles must avoid looking like a “dating site” or they lose credibility instantly. Even if more general information is contained in the profiles, the headers, instructional copy, and other information indicate a health focus to avoid any perception that the profile has a social or romantic purpose. If the titles orient a reader toward health, then reading about interests such as bicycling, taking long walks, or other stress-reducing activities will more likely be viewed appropriately.
Embrace and support a mercenary approach to profiles. Support the users’ ability to quickly assess profiles for their primary needs. (Are they like me? What can they tell me? Are they worth contacting?) This will ensure profiles are used as an important tool on the site, rather than being considered a forgettable tool. A visiting user should be able to easily find and learn about:
- The health concern or interest the profiled member describes
- The Arc of Needs stage the profiled member is in
- Treatments or solutions that could help them move through their Arc
- Resources they are using or have used to help them master their situation
The online health profile is still a new concept, and we continue to evaluate and improve the design through iteration. Creating an area within Revolution Health for people to share their health information and experiences constantly evolves as we observe how users communicate with each other: asking and answering questions, writing stories and blogs, creating lists, and joining each others’ “circles”. In the sensitive realm of health, minimizing any barriers to connecting, sharing, and learning are the design watchwords for this area of the Revolution Health website.
* Cope is only for those entering on an illness arc.
Understanding where a person is in this arc helps anchor the message and deliver more relevant messages that inspire action. A person moves through these stages when they want or need to effect a long-term health change, either to sustain health or manage illness. For example, an effort to lose weight or the need to manage a new diagnosis (either for themselves or someone else) follows this art. The Arc of Needs is what allows people to re-enter and maintain routine, the ideal state, when a life-altering changes is begun.
At Revolution Health, we needed to understand how people think about and behave around health issues. Based on individual interviews, we created a model of behavior called The Arc of Needs. The Arc of Needs process helps people recalibrate and establish new routines. The Arc of Needs describes what takes place when a person experiences an illness or wants to embark on a health objective such as losing weight or training for a marathon. We learned that people generally don’t think about their health unless there is some kind of trigger. In the case of a serious illness, it might be a diagnosis, or simply not feeling well. In the case of a health objective, it might be noticing that a favorite pair of pants is a bit too snug.
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