I’m leaving Pew Research

Believe it or not, 14 years ago, the idea of using the internet for health was a novel concept. That’s when Pew Internet published its first report about the social impact of the internet on health and health care, raising eyebrows across the U.S. Our data was cited in mainstream news outlets, in JAMA, and, most important to me, drew the attention of Tom Ferguson, MD, an online health pioneer who became my guide to the world of e-patients.

I will always be grateful for the incredible latitude I was given to explore and experiment at Pew Internet, thanks to Lee Rainie and our sponsors, the Pew Charitable Trusts and the California HealthCare Foundation. We fielded six national surveys devoted to health and five major fieldwork projects in online patient communities. We were explorers in uncharted territory – areas that would become the most important real estate in the industry – and we were breaking glass on a daily basis, always trying new things. It has been my honor to translate that research into storytelling that benefits decision-makers of all kinds.

For me the new truth is that the most exciting development of the connected health era is not access to information, but access to each other.  The implications are enormous for us all: consumers, clinicians, policy makers, and business leaders. The power of community in health can revolutionize the way care is experienced and delivered. It is our job as an industry to bring that to life, to legitimize and formalize the very real and quantifiable role that community plays in our health. I am called to pursue that mission. So I’m writing a book to drive the idea forward (more on that in another post) and leaving the Pew Research Center to commit to this idea full-time.

In September I’ll also start as an Entrepreneur in Residence (EIR) at the Robert Wood Johnson Foundation, the largest philanthropy in the U.S. devoted to the public’s health. Led by Risa Lavizzo-Mourey, RWJF’s focus on building a culture of health overlaps with my vision; RWJF is uniquely positioned to execute on this audacious goal.

By taking on the EIR role, I’m following in the footsteps of Thomas Goetz, who inaugurated the position and wowed us all with initiatives like Flip the Clinic and Visualizing Health. I can’t wait to get started, taking this definition of entrepreneurship to heart: “the pursuit of opportunity without regard to resources currently controlled.”

The power of community must be unleashed on health if we are to achieve the vision we all hold so dear – a world where empowered individuals and families make informed choices that result in living as well as they can for as long as they can. The wisdom people have about themselves and their loved ones is as vital to their health as the insight they gain from clinicians. Simply put, my goal is to help people understand how powerful they are.

82 thoughts on “I’m leaving Pew Research

  1. Just about everyone who has ever attempted to analyse the health conversation on the social web in English will have come across your work, Susannah. We all owe you a debt of thanks.

    Congratulations on the EIR role, and I am very much looking forward to hearing more about what else is coming next for you.

  2. I’ve often marveled at how well you’ve maintained an objective, balanced and diplomatic tone and perspective in your analysis and reporting for Pew. Many of the results you’ve excavated in your work point toward the benefits of patient empowerment. I imagine you’ll be able to promote that empowerment more effectively without the constraints imposed by adherence to journalistic standards.

    I’m excited about the prospects for what you’ll unearth and enable along these new trajectories you’re embarking upon!

  3. Mazel tov! A tremendous move, and a great fit for you. Very exciting! I couldn’t agree more with your stressing that access to others is a driving factor in connected health, and I’m stoked to see how (and pitch in where I can) you bring this to RWJF. Go, you!

  4. Susannah, congratulations on your news. So exciting! You are a true leader and an inspiration to us all. We welcome the opportunity to see you set the world ablaze in these new adventures, reminding us of the power of community in new and extraordinary ways.

    Also, selfishly, asking: will you continue blogging? pleasepleaseplease? cheers jeanne

  5. The title of this post surprised me…I felt for a moment that we were losing one of the brightest stars in the universe of health online. Hopefully after reading your post I realized that you will just take your shine to new points of the galaxy. Congratulations to RWJ. I hope you are very happy in this new project. I will wait for your book with the highest expectations. I hope you still find time for your blog. Success for you!

  6. Thanks so much, everyone!

    I should note that the EIR gig is part-time, so I’m not moving. In fact, it’s a wonderful “coming home” for me. I grew up in Princeton. where RWJF is based, and I’ll get to stay with my parents when I’m visiting, probably 4 days per month.

    And Jeanne, I couldn’t stop blogging if I tried :) It’s a key part of my book-writing process as well as my best source for renewal & strengthening of ideas.

  7. Susannah,
    You know that you have a army of “connected” people supporting you in your new venture. The wealth of geological data and insight that you have charted in the health arena to advance peer-to-peer health is astounding. I hope that PEW will continue with the path you have forged.

    I, too, watch with bated breath what you will do next and take comfort in knowing you’ll keep us informed as you do so well. Exciting!

    Colleen

  8. Your insight and knowledge has shaped many aspects of my work, especially when I get the pleasure of presenting information. Your impact with Pew has been immeasurable for those of us working in this field and I’m so happy to have been connected.

    Extremely excited for this next chapter!

  9. Susannah – I have so enjoyed quoting your work from Pew over the years! It has been such an important contribution to my own learning and for that I am grateful.
    What an exciting time for you and for the rest of the world who admire and respect your thoughtful and insightful perspectives on our collective human experiences.

    Congratulations!

  10. You’ve done great work with Pew, and we can all look forward to seeing what flavor of awesome gets stirred up at RWJF on your watch. Whatever, I will ALWAYS look forward to seeing you!

  11. This is exciting news for you and for all of us. RWJF will be a great new home for you to continue the work of sustaining and growing our community needs. Thanks for all the great work at PEW – I know we will continue to quote from your body of work there even though you have moved on. Congratulations on the EIR position – that is an outstanding honor and I know you will live up to the expectations with your next works.

    be well.

  12. Congratulations on the move to RWJF – you’ll be a great EIR and I’m sure will continue to be a leading light in all things social/digital and health. Looking forward to following your new adventures, Eleanor

  13. During my sometimes misguided youth, I enjoyed driving quite fast. It took me longer than it should to have realized that driving fast is completely safe — until one hits another object. Fortunately, I never did. There wasn’t a whole lot to do in my little rural town, so on occasion we’d go “ride The Bump.” The Bump was a D.O.T. failure — or rousing success depending on one’s views about road safety — that gave a certain back road just the right angle that, if one was going 45 or 55 mph or so (theoretically), one would be launched ‘ere so slightly into the air for a solid second. Dukes of Hazard it was not. That distinct sensation of anticipatory fear upon approach, a breath sucked in upon the launch, eyes closed and fingers clutching as wheels again met road, and the joyous giggles that followed is exactly what I recalled upon reading your announcement’s so very factual headline, explanation and resolution for the future. There was fear. Then there was joy. Congratulations, Susannah. I can’t wait to see what’s down the road.

  14. Congratulations Susannah. I did not expect this message so soon after your visit to Sweden. I really hope we will get the possibility to continue the discussions we had in Visby.

    • Yes, that trip to Sweden was my last one under the Pew flag — a wonderful way to go out! I’m sure we will continue the discussions. My primary focus for the next 6 weeks will be writing, but the fall will bring new possibilities.

  15. Dear Susannah,
    My first reaction in reading your headline was how sad your friends at Pew must be about this news, even as they are no doubt wishing you all the best in your new journey. If we subscribe to the wise words of Confucious, however, we know that “they must often change, who would be constant in happiness or wisdom.”

    Congratulations to you as you become even happier and wiser!

    regards,
    C.

  16. So excited for this next new adventure, Susannah – how exciting! I’m sure it will be fantastic – can’t wait to see (and hear about) all the great things you’ll be working on.

    • This made me smile, remembering that discussion we all had around the table at Cook’s Branch about tree shakers vs. jelly makers. Funny to think of myself as a tree shaker — but I think I can admit it now. I do like shaking things up, even as I keep the jelly factory running, too.

      • Tree shakers vs. jelly makers … love it! Congratulations and good luck as you shake both the tallest and unacknowledged trees, Susannah. As for your book, I’d love to learn more … might have some perspectives to offer about the impact of data, innovation and community in a real life (mine). Cheers!

  17. Congratulations, Susannah! Thank you for your important work and for inspiring people like me and the work we do. RWJF is so lucky to have you join them. I will look forward to your reading your book!

    Lynda

  18. Sweeet! We hope to see more of you in NYC now too and on panels and such at H2NYC of course. You have done great research at Pew and will be able to enable great action at RWJF.

  19. Congratulations to you, Susannah. No one is more deserving, or better prepared, to play in the fabulous RWJF digital sandbox. Laird

  20. This is so exciting, Susannah! An inevitable new chapter. Book-writing and RWJF both sound like a perfect fit. Congrats to you, and can’t wait to see/read what comes next!

  21. Great Step Sussanah! Taking the consequences of one’s evolved beliefs is not a thing anyone would dare, whne it means leaving a sure position and related conditions to good life. But innovators and great thinkers like you have prove to be, cannot do otherwise. I wish you and us, your followers, great inspiration and effects from your move! Congrats!
    Rob

  22. WOW!! This is big news. Congratulations on the new role. Following after Thomas is a great path, but you will be missed. Your research was always that one that you could trust. When someone quoted you or if they didn’t quote your work, that always told me something about their presentation. Good luck. I look forward to reading the book.

  23. Well, I have to show up here, but you already know how much your work is at the core of mine.

    The movement we study is at such a different stage than when our paths first crossed in 2008. Six years!

    For those who don’t know (and for future reference here), Susannah’s 245 blog posts at e-patients.net are here, and her 14 years of work at Pew are here.

  24. This is very exciting news Susannah and happy to commute with you up and down the coast as you continue to produce such valuable insight in the digital health conversation. Such a well deserved honor as EIR and delighted to consume chapter and verse.

  25. I think we need to list the points you taught us, which were often exquisite insights into others’ foggy views of this complex area. It would take forever to spread out your body of work on a great big table to get the big picture, so I’ll just start (without links), and we can add to it.

    The first that comes to mind is an observation, not a field study. When the anti-vaccine mess was all over the press, with people saying it proved the internet is unreliable, you pointed out that the “original sin” was that the big-journal peer review process had failed(!). In fact, the anti-vax people were (at the time) merely quoting the authoritative sources science teaches people to trust.

    The second was your delicious study showing where people go for different types of information: in broad terms, we talk to peers for information on dealing with life and conditions, but for an accurate diagnosis or prescription, the physician is still the trusted authority. In my own work that’s an immense clarifier – I imagine you too have seen the looks on physicians’ faces in an audience when they hear that.

    That led me to realize something I’d never noticed about my own case: information I got from patient peers played a decisive role in my outcome, but that didn’t arise from me going rogue: my primary had recommended the community.

    More later.

    • “I think we need to list the points you taught us, which were often exquisite insights into others’ foggy views of this complex area.”

      This sounds like a great idea, but I wonder if this sort of retrospective / appreciation might be better articulated as a separate post on http://e-patients.net/ (vs. a comment thread on Susannah’s transition post here, which already has many expressions of appreciation … albeit in less structured form).

        • My first draft of my book was going to be such a list but thanks to conversations with Howard Yoon, my friend/agent/author whisperer, I realized that what I REALLY wanted to share with the world is all the practical tips about how to pursue participatory, peer to peer health care, which have been shared with me over the years (and never were right for a Pew Research report).

          But I still have that outline — will find & share it.

  26. Susannah:

    Congrats on this next chapter! I’m excited for you and look forward to seeing what you’ll be cooking up next.

  27. “It is our job as an industry to bring that to life, to legitimize and formalize the very real and quantifiable role that community plays in our health.” — Nicely said. Congrats Susannah – Enjoy your new endeavors.

    • OK, I have to be honest: my dear friend Alexandra Drane suggested that line. Yes, I rely on community at all times :)

  28. It’s been so nice to have someone in the caregiving research field who is pleasant and funny and a sound researcher and a person with innovative ideas. I’ll miss you but hope to hook up with you at RWJF. Good luck with the book and new job.

  29. Oh, Susannah!
    Thanks for the years of insights, awakenings and information that you have provided through the years at PEW. You have been a steady, positive force for the evolution of the individual’s e-role in health. We wish you great fun and success in what lies ahead.
    Don

  30. Susannah, I know Pew will be sorry to see you go. Your new ventures sound exciting and challenging and beneficial — just what we’ve come to expect of you! Best wishes in your new adventures.

  31. Congratulations and best wishes, Susannah! I look forward to seeing the next stage of your great work, as there’s so much possibility to be realized in your words: “the most exciting development of the connected health era is not access to information, but access to each other.”

  32. Your are definitely my most interesting person of the week!
    Here’s why — It is always compelling to discover a new person of interest with shared values.
    I am hopeful that we may discuss at some point!
    At Health Action: “WE TRAIN 1000S TO INSPIRE 1,000,000 TO HEAL THEMSELVES FOR FREE!”

    Dr Jahnke — Roger
    http://HealthAction.net

  33. My best wishes. I think you have been operating as an entrepreneur for a long time and the new position will fit you like a glove … or should I say like the skinny jeans that you used as your marker for fitness.

    It’s a strong community here and the connections and the conversations that have saved lives and shared compassion and hope will no doubt find their way into your book. Can’t wait.

  34. Felicitations! I am envious of your new pursuits and I will be highly anticipating your new book. Keep engaged on social media so we can follow along as you blaze new trails.

    Pradip

  35. Susannah – a loss for Pew, a gain for RWJ, and congratulations for you. For us, we expect to continue the conversations and continue to be inspired! All the best
    -bob

  36. Congratulations Susannah! Thank you for all your work in patient empowerment and social media. I am look forward to reading your book and to hear about the wonderful work you will be doing at RWJ. Being a NJ resident I am very proud of the work RWJ Foundation has done and continues to do. Will you be in NJ ?

    • Thanks, Dee! I will happily stay in DC since this is where I’m rooted with family & community, but will spend 25% of my time in Princeton, where (really, really happily) I grew up and therefore can stay with my parents when I’m there.

  37. Congratulations Susannah. It’s an exciting opportunity for you. We’ve been extraordinarily grateful for the time you’ve spent with us to share your wisdom and to accelerate our learning. Keep up the great work!

  38. Congratulations, Susannah, and best wishes. Thank you for all you do to “help people understand how powerful they are”. Look forward to this next chapter!

    • Carole, Peter, your work is an inspiration to me — you keep blazing the path and I’ll keep singing your song.

  39. Many, many congratulations. Can’t wait to learn more about this. Reminder about my offer of editorial assistance on the book!

  40. Susannah, News such as this always takes one by surprise, but 14 years by anyone’s criteria is a goodly stretch in healthcare social media space; I for one will definitely miss your wisdom and direction. As the years progress I become ever more convinced that Goethe was right when he stated that ‘alles ist vorübergehend’, everything is temporary. An imperative never to be ignored. All the best.

  41. Susannah – Congrats to you! Your efforts at PEW supported and inspired our desire to connect patients and caregivers privately to exchange health related insights via TreatmentDiaries. We look forward to following you and gleaming insight from the next chapter of your professional perseverance in bringing the even more focus to health and social. Thank you for all you do. Best! Amy

  42. Susannah: You are inspirational! Congrats on this big step – I can’t think of a better person for the position you are moving into….

    And like most inspirational leaders, you have got me thinking deeper about the broader impact of opportunities out there related to the power of community and health. I and CaringBridge want to do more … we’ve only scratched the surface of the impact we can help others have within a community.

    There will be(and probably already is) a ripple affect to this new path of yours — you are going to have great impact!

    Congrats on the ‘pig jumping off the dock’!

  43. Susannah,

    I’m late to the party but this is such terrific news for you and for the Foundation. I wish you all the best in your new endeavor! I look forward to reading your book and to hearing about your entrepreneurial exploits.

    • Thanks, Jen, and don’t worry – you’re not late, the party is just getting started (at least in my mind). I’m grateful for all the encouragement I’ve received — it is boosting me up as I take some big chances in my professional life.

  44. Congrats Susannah!

    My jaw dropped this AM. I was looking for the e-Patient paper and Google showed me this link. I missed it last month and was floored this morning.

    Thanks for all the great work you have done with Pew. Excited for that team to continue their work and to watch you in the next evolution of your work.

    Can’t wait to see what follows,
    Rob

    • Thanks so much, Rob! Your comment came in while I was on vacation and was a great reminder of what I can look forward to when I get back to my desk on Monday: meaningful work, supported by a fabulous community.

  45. Lee told me the good (for you) news, and I was reminded by MRN’s link to your great career-advice post. You have a wonderful site and wonderful prospects! A propos of community and health, I hope you saw PCAST’s latest, which remarked on the value of taking a community perspective (seeing the community as a system, for purposes of improving health and health care): http://www.whitehouse.gov/sites/default/files/microsites/ostp/PCAST/pcast_systems_engineering_in_healthcare_-_may_2014.pdf
    Anyway, best wishes in this new role!

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