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The Significance of Health 2.0 for Patient Leaders

I had the distinct pleasure of attending and speaking at Health 2.0, one of the industry’s most important health innovation conferences held from September 16-18, 2018 at the Santa Clara Convention Center.  Hundreds of health tech startups and initiatives have been launched, showcased, promoted and catalyzed here in the last dozen years. Health 2.0 is a HIMSS conference.

Patient leaders are welcome in this event.  Some patients and caregivers may apply for and potentially win a full conference “Patients” or “Caregivers” scholarship courtesy of the Health 2.0 organization.  The conference presents an excellent opportunity for patients to join sessions and conversations with established and up & coming players within the health innovation ecosystem.

This year Health 2.0  implemented a three-day format, shortened from the four-day format of previous years.  The new format did not seem to detract from the quality and quantity of content provided or the networking opportunities offered.  As with previous years, the event was fun, exciting, and jam-packed with rich and interactive opportunities for patient education.

The two founders and co-chairmen of Health 2.0, Matthew Holt and Indu Subaiya, ably led and held forth all three days, offering valuable insights and facilitating relevant conversations across a carefully crafted agenda.  The succession of curated speakers and themed sessions deliver a catalyzing curriculum for innovation across the care continuum.

This year I was privileged to have been invited as a speaker to Patients 2.0, a smaller conference/workshop held as a half day pre-conference event that’s designed to give voice to Patients, Patient Leaders and Caregivers.  The opportunity to share my Patient Story and my thoughts on my particular “Love/Hate Relationship with Technology” made my involvement with this year’s Patients 2.0 all the more meaningful.

As a patient leader, I felt that Health 2.0 this year performed well in moving the needle for patients to co-create and collaborate with clinicians, providers, technology developers, and investors.  Health 2.0’s effort of patient inclusion in the health innovation process is significant.  For example, Catalyst@Health 2.0, which runs year-round innovation focused programs, this past year opened their sponsored mentoring programs and technology innovation challenges to patient-entrepreneurs and patient-innovators.

As great as these efforts are, it seems the healthcare industry as a whole still lags behind in involving patients and caregivers with development efforts for new and improved products and services. A quick go around on the exhibit hall and one notices that majority of products and services showcased are focused on serving providers, and only few that carry a pure patient focus.

Nevertheless, there is progress from the patient perspective, though it feels the progress is not coming fast enough.

This year some themes and takeaways from the event that I felt particularly meaningful for patients, patient leaders and caregivers are:

  1. Consumer Facing Tech that lets patients pull data from disparate sources, analyze and use them for their own care planning or decision support is emerging.  The patient focused Seqster and at least a crucial segment of Fitango’s offerings come to mind.
  2. The promise of “Healthcare without Walls” or “Meeting Patients Where They Are” is represented by exciting initiatives like MedicallyHome a system that helps patients across a range of conditions to experience 24/7 hospital care at home;  the Heal app, that goes beyond telemedicine into reviving the physician house call for the 21st century; and even Lyft Health Care, that provides insurance-covered rides to patients and caregivers to wherever they need to go to provide care to the patient.
  3. Dacadoo’s initiative of establishing a health score which is like a FICO score for health, based on a complex algorithm that includes nutrition, exercise, sleep, and lifestyle can be a boon to patients and survivors seeking a metric by which to evaluate progress toward their overall health goals.
  4. With the growing global shortage of physicians and care professionals, self care support tech becomes more significant.  In this category are Aaptiv, a fun audio-only “Netflix of Exercise” subscription based app and  Freshtri, a healthy habits builder with a neuroscience based “iteration engine” created with compassion design.
  5. Three inspiring initiatives that powerfully address difficult mental health issues and addiction in particular:  The Robert Wood Johnson Foundation opioid addiction challenge winner, Sobergrid, “the world’s largest mobile sober community,”  Recovery Record, a technology enabled “best practice” for eating disorders treatment, and Textpert.AI, an AI enabled technology with an avatar called Aime who can diagnose and help treat mental health issues like depression and addiction in real time.
  6. Co-Founder and President of Wired Ventures Jane Metcalf’s keynote on the Neobiological Revolution, the “accelerating movement that harnesses the latest advances in technology and biology to alter the human race” sounded promising and terrifying.  As patient leaders we will need to be abreast of the news in this space, as well as be aware of the data/information within our bodies as represented by the “omes” that may potentially be managed/altered for the benefit of humans such as the genome, the microbiome, the immunome, among others.  We need to include the information gleaned from this “digital” data during our due diligence when seeking to improve or optimize our overall condition.  Love it or hate it, I’d recommend subscribing to the Neo.Life newsletter.  Launch! Winner Nebula Genomics, for example, using blockchain technology, helps people securely collect, own, analyze and even sell our own genomic data.
  7. Osseointegration is a terrific path for people who have lost limbs to recover nearly full functionality with smart prosthetics that you can control with your mind.  Check out the work of Dr. Albert Chi of OHSU and the man with the world’s most advanced (and probably most expensive, to the tune of $120 million) robotic arm, Johnny Matheny.

As a patient leader, one theme that kept coming up in the conference is the need to build trust among patients, patient leaders, clinicians, scientists and technology providers.   After all, how can we work together if we don’t trust each other?  Trust, as I highlighted in my Patients 2.0 talk, is a very important issue that still needs a lot of work.  Speaking with other patient leaders in the conference, nearly every single one mentions TRUST as a significant issue that has been undermined by negative experiences with providers in the past. We patients are cognizant of the need to trust our doctors.  But what we have not thought enough of is how doctors (and nurses, other care professionals)  need to trust patients in order for them to wholly welcome them into the process of shared medical decision making.

For one thing, the film “Do No Harm” that was screened at Health 2.0 sheds light on the hidden but massive public health crisis of which the tragedy of medical students/physician suicides are only a symptom.  Filmmaker Robyn Symon in her talk during the “Unacceptables” session main stage described how the medical education system in the US foments burnout, depression and mental health issues among medical students, residents and physicians, driving some to the point of suicide.  In the film, she connects burnout, depression and sleeplessness to medical errors, which is the nation’s third leading cause of death, next only to heart disease and cancer.

I was deeply moved and angered by watching the film, for how can physicians care for their patients when they do not care for themselves?  The root of the problem is the hierarchical power-based medical education and medical delivery system that puts financial profits over honoring the Hippocratic oath, failing to honor it for themselves and for those in their profession.  This issue requires no less than a massive redesign of the medical education system.

There is no reason, especially with the surge of design thinking, digital education, display and VR technology, and a deeper understanding of neuroscience that a complete redesign of the medical education system not be undertaken, where physician students are able to study medicine more effectively in a manner that they can enjoy, and without killing themselves.  I would venture to add that patients be included in the education, as students who have the mental bandwidth and deep motivation to learn every aspect of their condition, and as teachers who can shed light on matters some physicians can’t.

If this redesign is not undertaken, and the broken system that perpetuates mediocre and erratic care that maximizes and hides medical errors not corrected, trust will continue to be undermined at scale, and there will be less hope of effective shared collaboration and decision-making at scale.

So to all physicians everywhere I say this: heal thyself!  For if you do not heal yourself, how can you truly heal others?  Have empathy for yourselves, for if you do not have empathy for yourselves and those you lead and teach, how can you have true empathy for patients?

We patient leaders have our own responsibilities, to study and learn to the limits of our capacities, so that physicians, technology providers and even sponsors and investors know that we can be trusted.  When we learn about how things look and feel from their perspective, learn the language and issues involved, then the more we are able to offer value in collaborative conversations and projects.  While we desire empathy, we can also offer empathy.  We can feel for those affected and silenced by the broken health care system.  In the exercise of  compassion, we can also be the most effective in calling for a true change and transformation within the very guts and culture of what we have always known to create something completely different and good.  Only when we get here, can the acceleration of health innovation that brings into it the richness, and juice from the collective wisdom of patient leaders, begin to approach its potential.

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Victoria V. Ferro would like to thank Health 2.0 for her patient scholarship to this year’s event, the Society for Participatory Medicine for their sponsorship of her conference travel and to WEGOHealth who helps patient leaders leverage what they already know to bring value to the industry and ultimately to other patients.  You can reach out to her at victoria@theunpatient.com and @trueacsah and @theunpatientrev on Twitter.

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