In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (“Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked Thomas some questions about his book.
|(PatientsLikeMe) What inspiration did you take from PatientsLikeMe? What did you want to say in a book that you didn’t say in the magazine story?|
|(Goetz) When I wrote the story two years ago, PatientsLikeMe was a much smaller community – just 7,000 members, compared to more than 50,000 today. But it was already clearly a phenomenon: the members were engaged in their health in unprecedented ways. In reporting the story, I realized that what’s going on at PatientsLikeMe is part of a larger phenomenon: new technologies like the Internet that let individuals use their health data. At PatientsLikeMe, this is happening among people with particular health concerns, from ALS to mood. But the same ideas are spreading to preventive health and diagnostic health, and my book is an attempt to capture the entire phenomenon and opportunity here.|
|(PatientsLikeMe) Are PatientsLikeMe members unique? Do you have to be an information junkie to delve into your health data, or is this something that anybody can engage in?|
|(Goetz) I spoke to several PatientsLikeMe members for my story and even more for my book. They are literally on the first page and all the way through to the last chapter. For a writer, PatientsLikeMe members are exemplary patients – engaged, articulate, and passionate about PatientsLikeMe. And yes, PatientsLikeMe members are unique, insofar as they are on the vanguard of healthcare. They have tapped into something that the rest of the U.S. and the world is just realizing: that it can be incredibly powerful and healthful to get granular with our health information and – even more importantly – to share that information with others, to use it to build new insights. But they’re not unique, I don’t think, in the sense of being all that different from the rest of us. I think they’ve hit on something that can work for vastly larger population. More people need ways to engage with their health data and to turn it into inspiration.|
|(PatientsLikeMe) What do you hope comes out of the book? Who do you hope reads it?|
|(Goetz) At this point, I’ve spent several years talking to people who have heard the gospel of engaged patients and collective wisdom. PatientsLikeMe and the other companies in the book have created something remarkable – ways to get people involved in their health – and to those in-the-know, it starts to seem like common sense. Of course giving people a way to engage in and share their data is a road to better health!But in truth, this is still very much the exception in the healthcare world. The rest of the world hasn’t heard the good word – they are still in the old paradigm where the patient is something to fix rather than someone to engage. My hope is that, just as PatientsLikeMe has spread from a mere 7,000 members to the 50,000 today, so the broader message of patient engagement is a contagious, even viral, philosophy. I truly believe that the message in the book – that when people have a way to engage in their health, they can have better health – is something that can truly improve the lives of many, many people.|
|(PatientsLikeMe) Can you share something you learned in writing the book?|
|(Goetz) Among the many things that I hope PatientsLikeMe members would enjoy learning about in the book, one thing stands out: the story of the Health Seekers. It turns out that in 19th century America, an important part of the pioneering westward expansion was driven by patients – specifically people with tuberculosis, seeking better health. These health seekers were exceptional, especially at the time, because they broke away from the way they were told to deal with their disease, which was basically to do as little as possible and waste away. The Health Seekers rejected this idea and decided that they would not only take charge of their health, but that they would forge a new direction for the country. In many ways, I see the Health Seekers as the ancestors of the PatientsLikeMe community – people who are taking charge of their health and building something new. And in the case of PatientsLikeMe, they are building something that will help thousands of others, something that gets more powerful with every new contribution and entry.I’m proud to have PatientsLikeMe in my book, and I’m incredibly grateful to the PatientsLikeMe members who agreed to share their story not just with their PatientsLikeMe brethren but with the general public. My hope is that their stories will help lead other people to better health.|
|(PatientsLikeMe) It’s our hope too. Thanks Thomas!
Thomas Goetz’s book The Decision Tree is available for purchase at Amazon.com here.