My wisest and longest-time friend in health care, Jane Sarasohn-Kahn has a new project, new research and a new website called HealthcareDIY out today. I encourage all of you to look around her new site and consider the stories she is telling, as they matter to all of us.–Matthew Holt
We’re DIY’ing home renovations, photo development, music playlists, personal financial management, and travel reservations. Increasingly, we’re also DIY’ing health. Think: Maker Faire-Meets-Health.
My thinking about HealthcareDIY was first inspired by my mother Polly, who died 34 years ago this month. She was my first role model for an engaged patient. When she was diagnosed with Hodgkins lymphoma in 1971, there was no internet for her to tap into for a patient network, a clinical trial, or a directory of oncologists or centers of excellence that were Top Doctors for treating the condition.
Polly did, however, absorb the books of Adelle Davis and her Let’s Get Well series on nutrition and health. Polly’s good friend, a librarian with whom she worked, tapped into the Index Medicus on her behalf and retrieved abstracts of articles on blood cancers that he printed out from the microfiche. Polly partnered with her doctor, an internist with a keen interest in hematology, for her care. She also had a huge and diverse social network (offline, of course) that surrounded her with a whole lot of love. Her M.O. was informed by Dr. Bernie Siegel, who started Exceptional Cancer Patients in 1978 and evangelized about patient engagement, living fully with cancer, and dying in peace, which she did, in October 1979.
Among many legacies Polly left me was her can-do attitude when faced with a six-month-prognosis upon diagnosis with Hodgkin’s. Mom worked full-time until the last two years of her life, wore beautifully tailored clothes and put on lipstick every day, and project-managed her health through eight years of treatment: primarily, radiation and blood transfusions. Polly figured out how to take control where she could, and she did it with grace, humor and sheer human will.
She DIY’d her health given the resources she had at-hand between 1971 and 1979: books, cassette tapes, in-person support groups, medical journals in print, a specialist and internist, and lots of love.
In the three decades since Polly’s death, two seismic forces have structurally changed consumers in America: the Great Recession beginning in December 2007, and the near-universal use of the internet in health. Ogilvy’s report, Eyes Wide Open, Wallet Half Shut, found two countervailing forces re-shaping U.S. consumers: re-trenching and re-imagining. On the retrenching side of behavior, people began to do more binging: in media consumption, drinking, and eating.
On the re-imagining front, some people looked to re-invent themselves, reconnect with others, and re-train to re-tool careers. This group of people has sought to be more active and more deliberate, and accept more complexity in daily living. These people are more mindful, more frugal, and open to trading down. 9 in 10 use coupons, shop at discount stores, and buy more store brands and generics.
For this latter group, Ogilvy said, “Self Reliance is the new insurance policy,” with a group ethos believing that, “Americans need to be strong, get their house in order, and protect themselves,” per the report.
That’s where HealthcareDIY comes into play. Wages for most people in American have stayed fairly flat, and health care costs have increased. In the meantime, the growth of high-deductible health plans for people with employer-sponsored plans as well as those seeking plans on public Health Insurance Exchanges demands that people hone smarter health decision-making skills (financial and clinical).
Grocery stores are hiring nutritionists. Pharmacies are administering more vaccines and retail clinics, back-to-school exams for kids. Walmart and Humana collaborate on healthy food labeling, and SoloHealth and Higi kiosks in grocers and drugstores are enabling people to take their blood pressure and weigh themselves while shopping the health and beauty aisle and discount clothing racks. Nike+, Jawbone, and Fitbit battle for space on peoples’ wrists for activity-tracking. Patients ask doctors for lower-cost treatments and more convenient appointment times.
This is the new retail health: people taking on DIY in health as we do in other aspects of our lives. We’re increasingly embracing the fact that health is where we live, work, play and pray, recognizing the huge role that social determinants of health play beyond our genes.
My partners and I are launching HealthcareDIY as a community and destination for people who are stretching these new health consumer muscles – the self-reliant re-inventors in the Ogilvy research — recognizing that we can control and choose for ourselves. Sure, we want to partner with the health system – with our doctors, our hospitals, and other providers. But we also want to work like heck to stay well so when we do get that diagnosis, whatever it is, we can face it stronger and smarter, and know how to access our medical records, how to effectively use the internet’s best health resources, share decision-making with our doctors, and financially manage our HSAs and high-deductible health plans.
In our first survey, Health in America 2013, we found that for health-engaged people, regularly saving money, cooking meals more at-home, sleeping well, attaining higher-levels of mental health and enjoying more satisfying sex lives are all inter-related.
We believe in four simple mantras that can help us bolster our health: eat right, shop smart, live well, and use technology intelligently – especially the internet’s vast health resources, and mobile phone apps that help people adopt and sustain healthy choices throughout the day.
Polly showed me how to do the first three. She was the fastest typist I knew on her IBM Selectric, and she was a voracious information consumer. I know she’d have embraced the Internet with her fellow engaged patients that Bernie Siegel starting corralling in 1978: she would have loved joining the PatientsLikeMe Hodgkin’s community, commiserating in the Smart Patients network, combing through ClinicalTrials.gov, and benefiting from Lotsa Helping Hands were she diagnosed today.
On October 8, 2013, one week after the launch of the Affordable Care Act’s Health Insurance Exchanges, we launch HealthcareDIY. Our Holy Grail: to help inform, inspire, and empower people and their evolving health consumer muscles. Please connect with us on our Facebook page at www.facebook.com/healthcarediy.