Reflections on Panel Discussion

As we near the end of November and prepare for a busy December, I’ve been thinking a lot about my trip to Las Vegas and opportunity to speak on a panel during the 2022 HLTH Conference. Some of you may recall my last post as I was preparing to fly there, which you can access here. Outcomes4Me organized the panel and unveiled their State of Patient Empowerment Report that day, which we discussed during the panel and afterwards and will be for a long time. This inaugural report put the perspectives of patients as to their healthcare experiences in black and white; not unexpectedly, it is sobering.

I often don’t realize how much I’ve missed attending gatherings and connecting in person with people I’ve “known” online. Getting to meet up with the Outcomes4Me staff, the others on the panel, and meeting new people was both exhilarating and exhausting. I also got to meet in person someone I’ve been mentoring for some time — yes, we’ve connected via zoom, but there is nothing like being able to give someone a hug in person.

And isn’t this really the essence of what we were talking about? That connecting with other human beings, regardless of context or purpose, is actually the most important.

Whether we are talking about “patient empowerment,” a term I heartily detest, or diversity issues or provider engagement or innovation, the foundational issue is the human element. We can talk about, design, tweak, obsess over or rail against systems. Protocols or processes can be unveiled and tested and discarded. Profits made, lawsuits filed, EPIC notes or check boxes completed. But at the end of the day, our healthcare system is filled with people. Fallible, frail and frustrated human beings, on all sides.

And the very fact that there are sides reveals some of the struggle.

We cannot ignore the fact that in the US, our healthcare system is a business. While many of our institutions are “non-profits” for tax purposes, the inescapable fact is that without money, that institution ceases to exist. What might be profitable or efficient can often create barriers and interfere with the clinical needs of both providers and patients. And what is happening in a lab or research study can often be at odds with patient goals and delivering healthcare to patients.

So, what do we do about this?

• How can innovation and research truly meet the needs of the individual patient?
• How can clinicians get back to practicing medicine in a way that patients need?
• How do we not leave some groups of people behind in this effort?

Here is what I have gleaned:

1. Begin and end with those who are the consumers of healthcare, the patients and their families. As I shared during the panel discussion, anyone who is involved in the healthcare system has to understand how it actually works on the ground to do a good job for patients. All the way up to the medical directors and the C-Suite of the parent organization, everyone involved in healthcare needs to work just as hard to be in tune with patients as they endeavor to make money. This interaction doesn’t just mean focus groups or patient panels, but should include shadowing real patients in real time.
2. Enlist and compensate medical providers for more than just providing care. Each of the medical providers I really admire do so much more than *just* see patients and are often doing too much in their “free” time. The medical providers who sit on committees, attend/speak at conferences, engage with patients outside of *just* providing care, go out of their way to educate the public, participate in patient led organizations, etc., should be compensated, encouraged and mentored.
3. Healthcare needs to truly partner with patient led organizations BEFORE decisions are made. From what I’ve seen and experienced, patient led organizations are typically founded because of pain and unmet needs. By partnering with organizations that are already standing in the gaps in healthcare, patient needs can be met more globally.
4. Ditch the top-down approach. One of the reasons I detest the concept of “patient empowerment” is that embedded in the concept is that someone/something is giving patients power. This idea is wrong on so many levels. The most successful provider-patient interactions is when there is a relationship where the doctor educates the patient on the prevailing medical science, the patient educates the doctor on how that information fits into their life, and then the patient makes the decision. No one else should be telling the provider or the patient what to do or how to do it.
5. Share information. One thing that COVID taught us is that when we share information in real time and collaborate, innovation follows. Sharing information and discoveries openly and working together on real solutions is the way forward.

Even as I type and read over my list, I am fully (painfully) aware that nothing is this simple. There are so many moving parts, contracts, players (in the open or in the shadows) that will affect implementation of any of these goals. At the heart of most of the barriers to these goals is the inescapable fact that someone is making money off of each step in the process of healthcare. And money fuels innovation and research.

Where does that leave those of us who want the system to work better? To work for the very people who need it?

It leaves all of us needing to do something.

That something is different for each of us, but we all need to do it.