The Patient Voice at HIMSS18

Mar 26, 2018

By Max Stroud, A Lead Consultant for Galen Healthcare Solutions. Founder of Doyenne Connections and Social Media Ambassador for HIMSS18. @MMaxwellStroud

As 43,456 people descended on Las Vegas in March for HIMSS18 there was a one group of attendees and presenters who came to HIMSS with an unparalleled passion coupled with first had expertise using, creating and leveraging patient facing tools. This group?   They are the patients.  This was a group of stakeholders who really have skin in the game. Software developers, payers and healthcare organizations that want to be on the leading edge of healthcare design and delivery would be wise to listen to them. In the Revenue Cycle Solutions Summit Johnathan Wiik of Transunion Healthcare stated that “Chronic disease represents 90% of healthcare costs.” If we can come together to co-create technology solutions that work for those living with chronic illness, we will not only improve patient care but we could also improve the bottom line.

I had the honor and privilege to co-present with Amanda Greene, more commonly known as @LALupusLady.  Amanda has been living with Lupus for 35 years and has become a “super user” of the health care system as well as a patient advocate. She described the ways in which technology helps her meet her goals and where it gets in the way.    She expressed frustration with having providers at two leading medical institutions that could not share data electronically saying, “I have one driver’s license and one social security card – so why don’t I have one medical record.” In this video clip from HIMSSTV, she talks about the importance of the patient experience and patient voice when building the healthcare tools of tomorrow.

Hopefully, Amanda inspired technologists and healthcare systems to reach out to patients – there was a session on Wednesday morning that gave insight into how to create a path forward to co-create and innovate with patients.    Lygia Ricciardi hosted a panel of patients who are also directly involved with just that.   Jen Horonjeff and Michael Joseph are both involved with organizations that help connect patients with organizations and businesses that are seeking input from patients.  Memorable quotes from this session:   “Healthcare organizations, payers, software developers and researchers are starting to realize the value of having patients to consult with, but there needs to be more visible tools in order to find folks to partner with." And another key quote: "The gig economy presents an opportunity to provide valuable expertise to the industry.”    Michael Joseph is a patient consultant with @wegohealth and Jen Horonjeff is one of the founders of @savvy_coop, a platform coop owned by patients and providing patient input to the healthcare industry.   It is an exciting time for the patient community to be stepping onto the stage and into the board room.   Even as these strides are being made, it must be acknowledged that patient advocacy at this level is a privilege.  Jen Horonjeff recently wrote a blog on the Inherent privilege of advocacy after returning home from HIMSS.

One of the most powerful patient presentations was “Democratizing Patient Data,” in which the mother-daughter team of Kristina Sheridan and Kate Sheridan presented their story.     Kate was bitten by a tick as a child and developed a classic bull’s eye rash.    Shortly afterward she grew very ill and saw over 30 doctors in three years – each viewing her case through the lens of their own specialty. Kristina and Kate hacked healthcare by developing their own process of tracking Kate’s overall symptom load and how things evolved with changes in medication and treatment.   

“Data has power. We created this chart with my voice. It starts with me not knowing if I could ever live independently and ends with me putting my wheelchair in storage and applying to college.”   - Kate Sheridan

Kristina went on to use their lived experience as a blueprint for a tool that she has developed and is now testing with a small group of patients with plans for wider testing in the future.   This presentation provided a blue print for how it can be done – starting with the spark of a single patient story and then building to scale and using input from providers and patients along the way.   If you click out one link from this blog, I urge you to click this one to watch their presentation (it starts a few minutes in at 5:53).

(Kristina Sheridan is researcher at the MITRE Corporation. MITRE’s independent research program that is funding her work)