The health care industry is on fire.
Washington DC has become lost in an endless game of political checkers. Our highest elected officials can’t even agree on the basic relationship between a health care system and its patients.
For its part, the system itself has shown it is willing to play a leading role in improving the quality and safety of care while becoming more efficient. From health insurers, hospitals, and provider networks to technology vendors and consulting companies, we’ve been seeing alignment behind a shared vision for population health management for a few years now.
Let’s start with the change. It’s happening, slowly, but it’s undeniable: Health care organizations have begun to operate differently. Doctors are being paid differently. Technology has started to transform how medical and business decisions are made. Science continues to introduce novel treatments to improve lives. These improvements collectively make the health care system more powerful than it has ever been.
And yet: It still feels like the system is too focused on getting more patients to experience those improvements, and not on improving those experiences for more patients. Finding the right care remains far too difficult for people of all backgrounds and medical conditions. For patients, the endless fragmentation and complexities of who pays who for what (or doesn’t), or who shares data with whom (or doesn’t), leaves them stranded on islands. Worst of all, all of this happens precisely at the moment when people are at their most vulnerable.
This has been happening for years. Look at HIPAA. It was built on the simple premise of ensuring that patients have access to their data. Instead it’s served as a barrier to that data for so many. Bridges can become walls if they’re not made correctly.
Even the latest and greatest technology has been built in a way that glosses over the person on the receiving end. Artificial Intelligence, for example, is being used to match a tumor’s genetic sequence to optimal treatments. But isn’t a cancer patient more than her tumor? When we’re sick and scared, we want to be told what the answer is, but bleeding edge treatments shouldn’t displace warm-blooded empathy.
It doesn’t take technology, or even an advanced medical degree, to learn about a person’s goals, concerns, or challenges.
At some point, this isn’t even about health care – the tenets of effective communication, empathy, and relationships are critical for the success of any organization.
Care at the Core
If we take away the sophisticated technology, the convoluted coverage schemes, all of the latin vocab words, the policy-making and policy-repealing, the diagnosis codes, and strange-sounding drug names, we’re left with two basic things: a person, and a problem.
In health care, we have a word for a person with a problem: A Patient. And as we know all too well, it’s not just the patient’s problem – health care impacts peoples’ caregivers, their families, and their loved ones. I’m starting to believe that this is the real core of health care.
In a way, the other stuff is just window dressing. And I don’t say that in a way that’s meant to be disrespectful to the thousands of doctors, nurses, health care professionals working hard to improve peoples’ lives. For whatever it’s worth, I went to school for cell biology, then public health, and then health IT. I’ve spent my whole career consulting in health policy and health technology. My dad’s a primary care doc who’s working at an Accountable Care Organization (ACO) in California. I know how important – and complicated – reform is. But anyone who’s spent time as a patient or caregiver will agree: reforming health care and helping patients with their problems are not the same thing. Not at all.
- The problems people face are often complex. For instance, imagine if a patient relied on two separate medical devices to stay alive, every single day. And then imagine those two machines couldn’t work with each other because two different companies made them.
- They can also be simple – stupid simple. Like the hospital monitors that beep so loudly that a sick patient can’t get the sleep she needs to recover from an intensive round of treatment or a major surgery.
- What happens when the best answers that a clinical team has to offer are built on a medical diagnosis that’s made inside of a petri dish inside of a laboratory, rather than built into the life of the poor child who’s suffering from the disease?
- What happens when the law gets in the way of the best possible care? We’re not just talking about HIPAA: Imagine if the only medicine that worked to treat your child’s chronic suffering was classified as an illegal substance.
It probably won’t shock you that none of those examples are hypothetical. In these cases, and many others like them, “the system” isn’t properly equipped to address the patient and their problem. It’s in these situations that health care needs to do a better job of turning to its greatest untapped resource: The Patient.
So, What’s the Fix?
Patient-centeredness is not a new concept anymore. There are dozens of efforts around the country, and even the globe, to introduce patients’ perspectives into the litany of reforms that are happening.
As a health care professional, one of the most engaging aspects of my work is attending conferences. When you strip away the buzzwords, sales pitches, and the PowerPoint slides, a conference is a great place to learn, to connect, and to talk about important issues in a real, human-to-human way.
My friends at HealthSparq approached me with an idea a few months back: What if there was a conference that was ONLY about patients? Not another one of those business tradeshows with dozens of executives in suits talking about consumerism – but rather, a forum where patients were the only ones allowed on the stage?
It got me thinking. What if we set up a place for a day where ordinary folks – moms, dads, and patients – to share the stuff that we never hear at conferences? To hear some real talk about how the health care system’s efforts to help people with their problems often fall short of the goal line? About how sometimes the system can add even more challenges to patients and families’ lives, on top of a difficult diagnosis? And most importantly, how these intrepid individuals were forced to roll up their sleeves and find their own answers?
So, we decided to do it. This June, at The Cambia Grove in Seattle, we’re launching the inaugural “What’s the Fix?” conference. It will feature a day of patients taking the stage to talk about how they assessed and addressed their own needs when the health care system wasn’t able to. In addition to highlighting outsiders’ approaches to coming up with their own “fixes,” we plan to point to some examples of how this sort of outside-in thinking is beginning to trickle upwards, back into the system, to bring some scalability to the one-off fixes that patients are often forced to figure out on their own.
While our goal is to leave our audience feeling inspired and drum up grassroots energy, we’re hoping to go one step further. We’ll be designing and sharing a set of “commitments” that our attendees and online supporters can make to unearth new approaches to improving the patient experience, from home-grown ideas to successful approaches that organizations are starting to employ around the country.