In his 1863 Gettysburg Address, Lincoln reiterated his commitment to equality for all people as originally defined in the Declaration of Independence. In the speech, Lincoln also paid tribute to the sacrifices of those who gave their lives at Gettysburg and told the country his vision of how to ensure the survival of America’s struggling democracy saying, “government of the people, by the people, for the people, shall not perish from the earth.”
On the night of Friday March 7, 2015, I started my weekend stint as a judge at the Philips HealthSuite Hackathon and I was asked to say a few words on stage at the beginning of the program. For a variety of reasons, it was this quote and concept above that came to my mind at the time and here’s why: the healthcare industry is going through its own civil war right now. It’s fought with ICD-10 codes and medical devices and biopharmaceuticals and risk-bearing financial agreements, not with muskets and swords, but it is very real. Never in our lifetime has there been so much upheaval so much controversy, and so much resistance to attempts to establish a wholesale industry changeover. Fortunately, never in our lifetime has there been so much energy around changing the system.
As I looked out at the several hundred people who showed up at the Philips Hackathon to be a part of that revolution to change the quality and value of healthcare, it was very clear to me how important the role of “the people” is in this war on our failed healthcare system. There has been a significant campaign in the past few years to engage the consumer (aka, the people) in their own health and to put them in a key role with respect to how they use and receive care.
At the beginning of the Hackathon, Jeroen Tas, CEO of Healthcare Informatics Solutions and Services at Philips, opened by talking about his own hypertension, his child’s diabetes, his father’s cancer, establishing his credibility first as a healthcare consumer and second as a healthcare executive. This was a very interesting and different positioning than I have seen before in a meeting sponsored by a major healthcare enterprise (and I’ve been to many) and it made me realize that every one of the people in the room probably has a story much like that. While they were here as programmers, designers, business people, clinicians, whatever, I suspect there was no one in attendance who didn’t have real stories to tell about their own or their families’ healthcare experiences, for better or for worse. My advice to the aspiring winners of the Hackathon was to start their efforts from that place, the place of the consumer/patient/human. It is only through that lens will we improve the patient experience and thus patient outcome.
Never has this been more important. It is worth noting that 51,000 people died or were injured at the Battle of Gettysburg and about 620,000 soldiers died during the Civil War’s 4 year duration; that is nearly half of all of the people who have ever died in America’s various wars, so a pretty stunning number. In contrast, approximately 400,000 Americans die every year due to avoidable medical errors, according to the Journal of Patient Safety; extrapolate that out to 4 years and we are talking about nearly 3 times as many people as died in the Civil War. As noted in a Senate hearing on this topic reported in Healthcare IT News, “Hearing members, who spoke before the Subcommittee on Primary Health and Aging, not only underscored the devastating loss of human life – more than 1,000 people each day – but also called attention to the fact that these medical errors cost the nation a colossal $1 trillion each year.”
I am now sitting in the Hackathon session on the morning of Saturday, March 8 (it goes through night of Sunday, March 9) and the hundreds of people are back bright and early, now formed into teams of little militias ready to battle against each other for Philips’ attention and also their prizes, but the room is notable for its competition. There are people of all ages, not just young people. There are people of all races, not just white people. There are a large number of women and men. It is a heartening site and not the usual one in a healthcare startup scene. And that is really important, because “the people” in this country look just like this and have widely variant healthcare needs because of their multi-racial, multi-cultural, multi-gender, multi-age composition.
I sincerely hope that this group and others like it, created by the breakdown of walls between executives and the masses in events like Hackathons, will help us realize a healthcare system that is of the people, by the people, for the people in a meaningful way. I also hope that this group’s efforts and the efforts of other groups like them will help us preserve what is great about America’s healthcare system—commitment to innovation, scientific rigor, increasing accessibility, expanding openness of data—while encouraging the people to take up arms against what makes it so dangerously compromised.
Many many people have been working for a fairly long time to design around and for patients. In the 70’s women changed how babies were delivered and birth control options, in the late 80s/ early 90s’ people changed how we treated and cared for people living with AIDS, in the past decade we have worked to include the patient voice in the design of care.
I grew up with a mom who was a women’s health care activist and one of my first jobs after college was in the AIDS community (and I co-founded a health co-op for temps at microsoft in the 90s’) so it was natural to bring patients voices into my world of health IT for the past 10 years. I introduced grass roots advocates and artists to places like HHS/ONC and infiltrated boards and committees to ensure the patient voice was heard.
One of the few conferences that literally put patients in the front of the room is Larry Chu’s 4 year old MedX conference at Stanford where patients are embedded into the entire event and people come together to design around their needs.
I have the street cred to be able to say that yes we need “health care of the people” but what we are also still lacking is the financial models and power to make that happen. Unlike all of the other stakeholders in the health care system (who are all paid to be there) patients and patient advocates are often at a disadvantage when it comes to access to information (their own or medical journals) and often finance their passion themselves or are dependent on the charity of conferences. We need to very clearly articulate that this is not only the right thing to do but that it has a business case if we really want to see it happen in the business of health.
We also lack the professional class of designers (none of use design our own homes, cars or cell phones) in health care who can take the needs of the patients and family members and convert that into services, apps, programs and policy. Even government agency’s like ONC or new government funded non-profits like PCORI still tend to cater to either congress, professional associations or vendor trade groups. There isn’t an organization that represents the collective needs of patients, let alone one that brings patients, providers, payers (which includes government) and employers together into an Alliance For Health.