don't design for epiphanies, design for the right sequence of baby steps
Many rare disease therapies are injections or infusions which require a serious commitment on the part of the patients and the caregivers. Supporting adherence to these regimens is important to both the physical health of the patients and the financial health of the pharmaceutical/biotech companies.
How to support behavior change was a key theme at the health sessions at South by Southwest Interactive (SXSWi) a few weeks ago. I’ll share some insights from a few of the presentations, but first some statistics from UCB and PatientsLikeMe show that online communities can help change behaviors.
Online Communities Support Change
Data from 221 completed questionnaires found:
- 55% of respondents said PatientsLikeMe.com was ‘moderately’ or ‘very’ helpful for learning about their seizures
- 45% of respondents found the site useful for helping them chart their seizures
- 30% felt they received better healthcare from their providers as a result of recording their symptoms
- 27% said the site was useful in helping them to manage a reduction in their treatment side effects. Improved recognition of side effects, better use of coping strategies, and improved reporting to clinicians were cited as possible mechanisms
- 27% respondents reported improved adherence as a result of using PatientsLikeMe
This data supports findings from an Inspire study.
It’s important to note that UCB, who markets the epilepsy drug Keppra, sponsors the PatientsLikeMe community and therefore has access to all the patient data. This is openly disclosed and does not seem to impact patient response.
OMG – My Pancreas Just Texted
John Pettengill who works at Razorfish and also has diabetes presented this session at SXSWi. He noted that there is something seriously wrong with the fact that 67% of people with diabetes are not appropriately managing their glucose level.
Pettengill sees the mobile phone as a key to behavior change because our phone is constantly with us. Pettengill mocked up a social tool for people with diabetes. He suggests that putting people together in a group that emphasizes the importance of self-care can help change participants’ behavior. Pettengill used Weight Watchers and AA as successful examples. The tool had categories based on what people were talking about to create “micronetworks of like-minded people in similar situations”.
One of the things that Pettengill said that resonated with me: “the tool is rooted in emotion and allows patients support to get back on track.” For example, his tool uses photos of faces from your support community that pop up to remind users that they aren’t alone. What a clever way to carry your support group with you to inspire you in those moments of weakness or sadness. They are always right there with you in your iPhone!
Health: Is There Really an App for That?
This panel introduced me to BJ Fogg and his interesting work at the Persuasive Technology Lab at Stanford. His key message was don’t design for epiphanies, design for the right sequence of baby steps. He provided a link to resources to create health behavior change. He reminded us that it’s about helping people to make small changes within their daily life to become healthier individuals. I recommend checking out his fascinating research.
Re-Branding Birth Control
This session was about changing behavior through design. The National Campaign to Prevent Teen and Unplanned Pregnancy worked with the agency, Ideo, to launch http://besider.org. Through ethnographic research, they learned that the scientific language and tone of the existing content and tools for birth control didn’t match the passion and emotion of the subject matter. Sex isn’t purely science, but requires “human-centered” design. According to Jenn Maer, human-centered design means truly understanding your audience and putting them at the center. The site provides education from the point of view of this audience. It shows empathy and understanding, and the tone is friendly.
The presenters pointed out that there’s a lack of feedback for birth control. When birth control works, the result is no result (i.e. no pregnancy). So the team decided to create a system to provide support every step of the way. The team sends out “frisky Friday” emails that include fun facts about sex. They also offer SMS texts for women to remember to take their birth control pill that also have clever questions and tips (to be delivered at times chosen by the woman). They’ve learned that these messages are forwarded to friends too. This is an example of how relevant information will be shared among the target audience.
Overall, the presentations were excellent and provided great material that were relatable to my work within the rare disease community. I hope you find some of these ideas as inspiring as I did.
(Image courtesy of Linda Aslund on Flickr.)