Kim should probably not be alive today. That was the medical industry’s prognosis for her in the 1990’s. That she is alive is a testament to the hard work and research she and her husband have put in to become super engaged and knowledgeable about Kim’s health. We had the pleasure of meeting Kim at our offices in Tucson, Arizona just a couple of days ago. Our entire team filled the conference room while the others skyped from around the world so as not to miss what was a powerful talk and collaboration between Lifetime Health Diary and this spectacular ‘patient of the future. Kim Goodsell Genomic Medicine, Topol.
Kim Goodsell features prominently in Dr Eric Topol’s recent book “The Patient Will See You Now”, as through sheer dedication she did what even Mayo Clinic thought was not possible, self-discovering and proving that not coincidence but the rare gene mutation LMNA was the root cause of both her rare heart problem and rare nervous system problem.
Dr. Eric Topol, the preeminent thought leader and visionary of the digital medical revolution, recognizes Kim, as a “patient of the future”, and over the past couple of years she has become famous in her own right in the patient advocate world with deserved attention. BBC – the amateur who suprised science Supporting the demand for more information, Kim’s website explains her philosophy on the digital patient revolution and provides a web-based centric hub for doctors, patients, policy makers, regulators, industry and business to come together to curate outcomes.
We set up Kim’s personal Diary on April 23, 2015, which will include her paper and electronic data since 1995! We are very confident that LHD will tell her challenging and complex health story better than any other method. While setting up her Diary, we asked Kim for her first impressions. “…actively help(ing) the user get their paper and electronic data into their Diary is huge. For even the most engaged patients I know this first step of even obtaining their medical records is a daunting task, let alone organizing it into a cohesive story line.” We understand this and to support every LHD user is a member of our dedicated Kindness Care team, who not only assist to sort, scan and index paper and portal feeds, but also reimburse early Founding Members with some of the fees for getting records.
Kim shares her opinion on what a consumer will get from using LHD, and how providing more information is true patient empowerment, “I think once you help the user over the first hurdle you would hook them into wanting more information and control, and this would grow until they become the CEO’s of the healthcare.”
Kim says, “Studies confirm that patients actively contributing to the monitoring of their health has a remarkable impact on their behavior and long-term health outcomes. Give them ownership and control engagement will naturally arise.” Health and Behavior: The Interplay of Biological, Behavioral, and Societal Influences .
As an observer of her own self, Kim offers thoughts as a patient: “I’ve thought of ‘Kim’, the phenomena, as a lab experiment in which to test my assumptions for most of my life and I have to admit there’s no experiment that’s engaged me more … and it’s really fun to experience what interesting things you can do with the data to alter the predicted outcomes … which in my case was no cure, progressive heart failure and disability.”
“I think the service LHD is offering is unique and of REAL NEED.”
Being a Digital Patient Revolutionary, Kim has attended the most prestigious and comprehensive medical conferences in the world. Despite initial rejections and obstacles she persisted, and as a result has positioned herself at the epicenter of the digital medical movement. Formerly a world-ranked endurance athlete, Kim and her husband/partner CB spent a good part of the past 30 years exploring wilderness, living in remote locations and generally resisting “connected” technology.
In 1997, Kim was implanted with one of the first and most powerful remote medical sensors on the market – an Implantable Cardio-verter Defibrillator (ICD). Since, she has become uniquely qualified to curate medical technology and shares with us the following;
“There are tons of health and fitness apps on the market that do all sorts of phenomenal things that help people get healthy and stay healthy. However, Topol’s director of digital medicine Steve Steinhubl at Scripps Translational Science Institute, who is testing the validity of these apps and mobile medical devices notes that pure activity trackers are a growing fad and studies indicate that usage drops off after the novelty wears off.” She reiterates, “Despite this, studies are confirming that patients actively contributing to the monitoring of their health has a remarkable impact on their behavior and long-term health outcomes.”
Is all data equal? It’s not only obtaining data – it’s making it useful. Kim identifies this by saying, “But “self-monitoring” — the process of tracking and analyzing your thoughts/actions to become more aware of how they impact the data and your goals has been confounding. Entering and organizing the data is cumbersome and extracting meaningful/actionable information is almost impossible for the average person. Engagement is key and providing the tool to give a vertical vantage point and cohesive story of your personal health will provide a missing link in the comprehensive strategies of the ‘Digital Health Care Movement’ …. BRAVO!”
Beyond managing and understanding your own data, what else does Kim think is vital for better health? “Food – the most overlooked medicine; either your medicine or poison”, she says! We are thrilled that Kim is not just still alive today, but thriving and helping us assist patients like her with complex conditions to better understand and manage their health. Thank you, Kim!