
In 2005, I took a call from someone who worked at Planned Parenthood. He wanted the conversation to be off the record, so I didn’t even write down his name, which is a shame because that conversation changed the direction of my career.
The caller had seen media coverage of Pew Internet’s health research, probably the Health Information Online report, which included the finding that 11% of internet users in the U.S. had gone online to get sexual health information. I remember hearing disappointment in his voice when he learned that we didn’t have data on teens since that is an important demographic group for Planned Parenthood. Our conversation turned to search engine optimization and other ways to capture the attention of people looking online for health information.
Then we started talking about the real opportunity we both saw emerging online: the ability for people to connect with others who share their same concerns, same life stage, same outlook. I wrote down one sentence in my notes, which I found yesterday while cleaning my office:
“Teens want a just in time someone like me.”
The idea is that people don’t think about their health until they need to and then they want to not only connect with good information, they want it tailored to fit their needs and circumstances. A teenage girl making a birth control decision may want to get advice, for example, not only from another teenage girl, but from someone in her neighborhood, if possible.
More generally, people often don’t want to hear about “usual” treatments or solutions. They want to know if it’s the right one for someone like themselves, whether that means someone who is deeply religious or totally unconnected to faith, someone who lives in the Bronx or in rural Montana, living with a specific genetic variant or not. All of these aspects of life play into our health decisions.
“Just in time someone like me” captured the spirit of the self-care and peer support movement that Tom Ferguson, my mentor, had been sharing with me for years. But it was pithy and it grabbed me in a way that no other phrase ever had. Once I wrote it down that day in 2005, it was stuck in my brain. And like when you learn a new word and then see it everywhere, I saw examples of people seeking a “just in time someone like me” in every research project I conducted from then on.* I poked and prodded and pushed on the concept until I knew it was solid from every angle.
Now I’m writing a book with a working title of “Someone Like Me.”** I am sharing the best of the stories I’ve collected in my fieldwork, plus advice from people on the front lines of health and health care who have helped me understand that the most important innovation of our era is not access to information, but access to each other.
Thank you, whoever you are, for that phone call in 2005! And thank you, to all my friends and colleagues, who have continued to inspire me. Onward!
* See for example:
Finding Answers Online in Sickness and in Health (2006)
E-patients with a Disability or Chronic Disease (2007)
The Social Life of Health Information (2009)
Peer-to-peer Health Care (2011)
** 2018 update: I put my book on hold while serving in the Obama Administration as the CTO of HHS and since then have been conducting fresh research into the peer-to-peer phenomenon. I may yet write the book, but right now the field is moving so fast, I am expanding my independent research and consulting practice, helping organizations understand the power of peers.
Great post. So true in sexual health…looking forward to your book!
Thanks, Ramin! I realized when I tagged this post with “sexual health” that it would bring up Going Viral Against HIV and STIs, another post that is full of examples of peer advice. So, so key to unlocking the potential for better health!
Great post Susannah! Best of luck on the “S.O. like me” book. Keep us updated on its progress! Can’t wait to read it.
Thanks, Brett! I am so excited to share this collective wisdom with the world.
Love this, and looking forward to your book. I so can relate to the need to want to talk to “someone like me” when I went through our medical drama with my son, Maxton. The doctors were never able to connect me with someone (the issue is rare). Not even the internet produced a “someone like me” connection. After it was all said and done, I told the doctors that I will be willing to chat with any other mom in the same situation. You crave it in times of crisis.
I hope that your doctors take you up on your offer — I know those other moms would love to connect with you. And thanks for the good wishes 🙂
Delina, I too am a mom of a child with a rare disease. Lucky for me, another parent with a child with that exact same rare disease was sitting in the same exact waiting room as we were several years ago. Thanks to her, we got our diagnosis despite years of seeing expert geneticists. Don’t give up–connecting with others in your situation matters. I now work for Rare Disease Sweden and would be happy to poke around my community here in Europe to see if there are others who share your child’s diagnosis.
Thanks, Cristin. My son’s condition was Fetal SVT with hydrops. It has resolved completely. Since you posted this, though, I googled it and there are other women posting about their experiences (not the case in 2007). So, maybe I will periodically do a search and chime in the conversations. Glad this post brought it all back to the front of my consciousness.
Can we pre-order the book yet? I know it will be fabulous – and indeed it’s fabulous to know that there is ‘someone like’ me who is a caregiver to a ‘kid like Alexis’ out in the world available on my phone, my computer, my hospital computer, etc – a link to a support network with a movement of fingers. I’m thankful this is available in my lifetime – and has probably contributed to Alexis having a lifetime.
This is what drives me — the knowledge that Alexis is having a better life (maybe any life at all) because of the work you and other moms, dads, caregivers have done to knit together a network. I want everyone to have the chance to do the same.
Congratulations Susannah! I can’t wait to read it. As a parent of a child with a rare disease, other someone’s like us are critical not only for emotional support but even more importantly, in making sure we get access to the treatments and interventions that we need to live joyful, healthy lives. I am always grateful for the wisdom of experts, but equally grateful for the wisdom of lived experience of others who share my situation.
Thank you! It was such a treat to see you in Stockholm and hear about the work you’re doing there.