Interview with Kate Brigham/PatientsLikeMe
Kate Brigham is the Design Director at PatientsLikeMe, an online patient network where patients can connect with others who have the same condition, track and share their own experiences, and learn from other patients like them.
Kate is participating at HxRefactored this year as a panelist in the “Patient-Centered Design: Core Values in Healthcare” track. In anticipation of her HxRefactored panel, she spoke with us about what fascinates her about her work, whys she feels at home at HxRefactored, and how she’d use a magic wand, if she had one.
Q: What is PatientsLikeMe and how does the organization help people?
A: At PatientsLikeMe, we provide patients who have chronic and life-changing conditions with a place to share information and get social support. While there are lots of online “patient communities” out there, what differentiates PatientsLikeMe is that patients can create rich data profiles about themselves, tracking treatments and symptoms over time. These profiles can help them look at patterns in their own health, and they can share these profiles with others who have similar conditions to provide them with information that may be helpful in their healthcare journeys.
In the process of compiling these profiles, PatientsLikeMe members generate data about the real-world nature of disease that helps researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. We are able to take aggregate data and share it with pharmaceutical companies, researchers, and others, which helps inform research beyond the small window of a clinical trial. The information also shows real world problems and challenges that patients face.
Q: What led you to a career in health?
A: When I first got into design, I started out working on projects for kids, and then moved into the education sector. I liked the idea of using design to help people – I was never really interested in using it to sell the latest widget. I eventually worked on some healthcare projects and I loved the idea that the design I was working on could really impact people’s lives in a positive way. I love what I do. It is fascinating to me. I learn something new everyday. It is unbelievably interesting, and it feels really personal because we all have concerns about healthcare for ourselves and our families. The work is really meaningful to me.
Q: What new health-related website, app, or technology do you think will improve health the most?
A: I am really interested in the new ResearchKit app that Apple just announced – it has great potential for people to track and share important health data. Apple’s reach is so big, so gathering health data from iPhone users around the world could have major implications for healthcare and research.
Q: If you could wave a magic wand and fix anything in healthcare, what would it be?
A: I’ve talked to people who’ve faced crippling debt and financial ruin trying to pay for the care they received, even if they had insurance. It’s heartbreaking. If I could wave a wand and change things, I’d love to take the financial aspect out of healthcare for patients. It would be great if everyone had access to the care they need without having to worry about whether or not they can afford it.
Q: What does patient-centered design really mean?
A: “Patient-centered design” can be one of those buzzwords that gets thrown around. But for PatientsLikeMe and for me, it is about stepping into a patient’s shoes and truly understanding every part of their journey and the challenges they face at each turn. Patient-centered design means using that information to solve real problems, not just perceived problems. When you look at the world through a patient’s eyes, you can use that perspective to make real changes in care and treatment.
Q: What made you want to speak at HxRefactored?
A: I’m really excited to be invited to speak at this year’s HxRefactored. I have attended the conference a couple of times in the past, and I feel right at home there. I saw PatientsLikeMe co-founder, Jamie Heywood, speak at HxR in 2013. Also, I did a UX panel at UXPA with Amy Cueva of Mad*Pow, and I thought she was fantastic. It was a lot of fun sharing the stage with her. So, I am excited to be a part of the conference that she has helped put together. I think it is a great gathering for people who are interested in design and healthcare.
Q: What will you be speaking about in your panel at HxR?
A: The panel I am participating in is called “Patient-Centered Design: Core Values in Healthcare”. I’m going to talk about designing for the patient journey. I’ve been lucky to interview many people with many different health conditions, and I’ve learned a lot about how they are feeling and what they are facing at different points in their healthcare journey. I’ll be sharing what I’ve learned and highlighting a range of different solutions – both online and offline – that are being used now to help people solve these problems.
Q: Why should attendees come to your panel discussion? What will they take away from it?
A: This will be a helpful session for anyone interested in learning more about the patient journey and stepping into a patient’s shoes. People will leave with a better sense of some of the questions patients are asking, emotions they’re struggling with, and real problems they’re facing. Attendees should expect to gain insight into specific things that help patients along the way and plan to leave with some new ideas about how they could help to solve those problems in their own work.
Q: What is your mission or larger goal in healthcare and why?
A: One goal we have at PatientsLikeMe is for every patient in the future to be able to benefit from the knowledge of those who came before them. Because of HIPAA, sharing data is complicated right now. But, as we go forward, shared data is going to be a key component in healthcare. It is going to take a major shift in the healthcare industry, but we hope in the future all patients will have a more informed position to make a judgment from and that they will feel more confident in their healthcare choices, thanks to the information they have access to from other patients just like them.