Patient Engagement, Events

Friends, colleagues share their memories of Jess Jacobs

We asked individuals to contribute their memories and wishes. Many people responded.

By on October 18, 2016
Jess Jacobs

Jess Jacobs, 1986-2016

Jess Jacobs was an advocate with an edge, as former national health IT coordinator Dr. Farzad Mostashari described her. She worked in government agencies and in the private sector to make our healthcare system more empathetic and more efficient. She passed away on Saturday, Aug. 13. She was 29.

To honor her contributions to innovation in healthcare and her devotion to her many friends and colleagues, we created a remembrance for Jacobs. We collected some her sharpest and funniest tweets. We reread the fantastic analysis on her blog. We asked individuals to contribute their memories and wishes. Many people responded.

The final video, which is debuting Tuesday during the MedCity ENGAGE conference in San Diego, will include selections from each contribution. You can watch and read the full tributes in this post.

Fred Trotter, the CTO of CareSet Systems, shared these memories:

https://www.youtube.com/watch?v=DTGoFY5uVcg
Mostashari worked with Jacobs at the Office of the National Coordinator for Health Information Technology. He’s now the the founder and CEO of Aledade. In this video, he described meeting Jacobs for the first time:

https://www.youtube.com/watch?v=dlICE4rgqG8
Wil Yu is the vice president of innovation strategy and business development at Lumiata. He was a friend and colleague of Jacobs from their time at the federal government’s Center for Medicare and Medicaid Innovation. He shared this remembrance:

sponsored content

A Deep-dive Into Specialty Pharma

A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.

By PurpleLab

The recent remembrances for Jess on social media span an extraordinary range of backgrounds. Artists, nurses, physicians, policymakers, technologists, entrepreneurs, former patients, and many more — they are all coming together to cherish her memory because she continually brought them together. She recognized that the solutions to our nation’s problems aren’t to be solely found in better data or technologies, but in the trust we have in one another and the strength of our relationships.

From what I could see, Jess established these relationships and friendships effortlessly, because of the trust she engendered and the trueness of her voice. She cared very much about her friends and colleagues and easily elicited a similar response. She saw beyond the artificial boundaries that we set up for ourselves and others and was able to communicate in a manner that resonates towards action. I see little difference between the effectiveness of her messages as a patient, as an advocate for innovation, or as a leader in healthcare, because they all came from the same true and pure voice.

Jess was able to channel her creativity and passion into incredibly worthwhile activities that will certainly lead to safer, healthier and better lives for others. Her efforts to improve healthcare weren’t confined to the workplace, as she dedicated her personal time and energy to similar activities.

Jess represented some of the best qualities of the American social innovation — a fervent desire to improve lives by finding opportunities to bring together the best people and ideas for common benefit. Her empathy and leadership will continue to serve as an inspiration for anyone who aspires to bring change in healthcare, and succeed in life.

Dr. Wen Dombrowski is the chief convergence officer and co-founder of CatalAIze. She was a close friend. Dombrowski led a moving meditation at the Washington, D.C.-area memorial held for Jacobs. This video recreates the meditation and highlights memories people had of Jacobs.


Dr. Bruce Darrow is vice president for IT and CMIO at Mount Sinai Health System in New York. In 2015, he used Jacobs’ tweets to make a point to his colleagues at a town hall meeting of the hospital’s IT department. Darrow wrote:

At the time of those tweets, Jess was hospitalized (the name of the hospital is not included, but please note that it was NOT Mount Sinai; Jess never did receive medical care at Mount Sinai) and Jess was tweeting to the entire world that the person entrusted with watching her to make sure she [Jacobs] wouldn’t fall, had fallen asleep and the nurse call bell had been turned off because there was nobody available to answer it.

The primary point I hoped to make was that those of us in health IT need to remember that patients like Jess have as much IT firepower in their hands as our hospitals do.

The secondary point was to remind my IT colleagues — all of them well-meaning, many of them not clinicians, and most of them distant from the actual delivery of clinical care — that everything we do in IT is for the sake of our patients, and that they have names and feelings. Jess helped us all remember that.

The memorial video mentioned the claims analysis Jacobs did on her medical care in 2014. The blog post, “On wasting my time,” includes a detailed analysis of her 130 healthcare visits.

Several people inspired the themes in the video. Jessica Slice never met Jacobs in real life, but the two women were connected. Slice also has both postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS). This excerpt is from her post, “In Memory of Unicorn Jess”:

She was a unique example of a patient who suffers from a rare disease, possesses a magnetic sense of humor, and maintains a razor-sharp ability to observe, summarize and then explain the reasons for a situation. Her education, professional training and natural abilities meant that she was able to exist within the medical system while simultaneously observing it from a distance. Through Twitter and her blog she picked apart minor inefficiencies, egregious errors and dehumanizing attitudes. But instead of drowning in the details of injustice she was able to explain the underlying systemic issues at the core.

Our healthcare system is not designed to respond well to mystery. It’s much easier to patient-blame or pass us on to someone else than to dig in with us. Rare is the doctor who sees our complicated bodies and chooses to devote the time and care to a patient with low potential for recovery.

A woman with POTS is in the appalling position of having to prove the existence of an illness that is poorly understood within a system that is predisposed to blame her for her symptoms.

Those with EDS have connective tissue that is made of material that is not-quite-right.

Jess pursued healthcare transparency by making her own condition visible. She fought a larger battle by displaying the deficiencies in her own care. Fighting an illness can feel unbearable and unfortunately that is often unavoidable. Jess understood the system on a micro and macro level, something that most patients can never do. She was brilliant and powerful and she used her voice.

Carly Medosch was a close friend. She helped guide the memorial video and wrote this post about her friendship with Jess:

The first time I met Jess, started with a health tech happy hour and ended in me learning how to set up the tubing so she could get fluids via her chest port.

Being friends with Jess meant always being aware of how sick she was. I spent a lot of time helping her get medications at home, cleaning up, and even sometimes (although she hated it) driving her to the ER. I fought nurses for her and with her. I encouraged her to drink her Ensure (earning me the cherished nickname of “tough mom”) and got the personal cell phone number of one of her doctors.

Being friends with Jess meant always forgetting how sick she was. Jess was incredibly kind and caring. She would create elaborate care packages and mail them to friends. You’d wonder how she pulled it off? — wasn’t she just in the hospital herself? She was always online with friendship and encouragement. She was always smiling, laughing, even if it was at the absurdity of life with chronic illness.

Dr. Ross Martin, who calls himself the founder of the American College of Medical Informatimusicology (ACMImimi), wrote “More Than A Memory” for Jacobs:

Martin also pledged to work to further Jacobs’ legacy.

The Jacobs family has asked for memorial donations to go to the Walking Gallery of Healthcare, a project started by artist-patient activist Regina Holliday.

Photo: Facebook user Jess Jacobs