SPM2018 Recap: Taking Action to Drive Change

A couple of weeks ago, HealthSparq sponsored and participated in the Society for Participatory Medicine’s 2^nd Annual Conference: Democratizing Healthcare (#SPM2018). After all the work I’ve done with What’s the Fix? over the past few years, this conference is very close to my heart. There are amazing individuals and organizations I have come to know through #WTFix – and our involvement across social media and through partnerships – and many came together at the  event.

Before I jump into my list of big takeaways, I want to share one overarching message that stuck with me, which comes from speaker Rasu Shrestha, Chief Innovation Officer, UPMC:

“Just because it hasn’t been done, doesn’t mean we can’t do it. Just because it hasn’t been seen, doesn’t mean we can’t envision it.”

Now, without further ado, here are a few of the biggest messages I walked away from #SPM2018 (and if you’d like to check out the videos for yourself, you can see them all right here on YouTube!):

Partner in unconventional ways to make change happen. The first big message of the day came from Doug Lindsay, who I first heard from at What’s the Fix? in Austin earlier this year. He shared the importance of learning to partner with physicians in ways that help make every situation a win-win. As a patient, be clear about what you are observing in yourself and share it. You can have very astute observations that might not be explanations but are just as useful to a clinician or a scientist, so don’t be afraid to bring them up. However, know that you are just making observations, not clinical diagnoses.

Maximize the NLM – Next up in the morning, we heard from Patricia Flatley Brennan, RN, PhD, Director, National Library of Medicine (NLM). We were very inspired by Patricia’s humor and passion for driving change in health care by giving people the information they need, how and where they need it, through new and ongoing initiatives. NLM is focused on “embedding knowledge to the point of action,” and that is an admirable goal indeed. If you take one thing away from the work and mission of the NLM right now, however, it’s this call to action from the Brennan: “Tell me what you need, so I can bring that to you – after all, you pay for it!” The NLM is publicly funded – maximize it!

The NLM is committed to a strategic plan that includes reaching more people in more ways through enhanced dissemination of information – but they need input and insights from all of us (especially patients) to help inform the information dissemination and research. Once you’ve taken a look through the NLM website, check out these specific tools mentioned in Patricia’s talk:

• PubMed Lab to find a new search capability
• NCBI minute series on the NCBI YouTube channel for quick tips on how to use available tools

Unlearn what we need to unlearn. “It’s not just about what we can learn at a conference like this, it’s what we can also unlearn as we reimagine the future of #healthcare.” – @RasuShrestha

This was one of the most powerful statements of the day for me because it’s something I’d never thought about before. We need to learn to let go of what’s old, outdated, or just not working, so we can make room for the new and the future.

In the afternoon sessions, we heard this idea reiterated by Brennan Hodge, CEO of Citizen Health, who said, “The status quo is not going to fix this – they built this.” To change the future of health care, it’s too easy to continue to do what we’ve always done, and that is what will ultimately fail us all, by failing the health care system.

Lead first with empathy. This gem came from Rasu Shrestha, who also stated that “Design thinking leads with empathy.” Regardless of whether or not your organization is focused on a design thinking philosophy, this is an important reminder for all of us to put ourselves in our end users shoes to better understand their pain points, by trying to better understand what they are going through.  To move forward in health care, we need participatory design thinking. What is that? It’s a process that involves bringing in the end users of the “innovative health care solutions” we are trying (or hoping) to create at the beginning of the process, not at the end. If what you thought is not going to work, or isn’t working, let it go and move on to the next thing.

It takes two to tango. Sarah Krüg brought a live tango to the stage (#lifegoals for how to end a presentation) to demonstrate just what a true partnership in a provider-patient relationship needs to look like. It’s all about give and take. The session was a reminder of two important things from Sarah,

1. It will be understood that “the patient has a life expertise that’s just as important as a doctor’s medical expertise, and when the two come together it can lead to a powerful combination.”
2. And each of us “will recognize the power and responsibility [we] have in [our] own health and healthcare and communicating with doctors.”

Be participatory. Obvious? Sure. But still worth calling out? Definitely! The theme of being a participatory member of your own care came through in a variety of ways – and more than being participatory, it’s about taking control of your health care because no one will do it for you. Here are a few highlights that came from the speakers:

• “Be proactive with healthcare, rather than reactive” – @BrennenHodge
• “I realized no one was coming to rescue me. I decided it was time for me to take the lead on my condition.” @Doug_Lindsay
• Grace Kennedy doesn’t give her providers the chance to be passive. Such an awesome young woman who not only asks questions herself, but tells others to do so. She takes being prepared, knowing herself, knowing her records, and knowing her providers to a new level. And, she is only 16!

We still have a long way to go – but we can get there. And it’s with conferences like this, and what we try to do with #WTFix, that bring in a diverse range of topics and stories that include data, behavioral health, patient participation, provider awareness, partnership and initiatives of all sizes, that we believe will help get us there. It’s the people that are sharing their stories to drive change who will transform health care, we just have to help support them, highlight them, and bring them together to create new partnerships to create change. We can’t say we don’t encourage everyone to create some “crimes of innovation” as Jason Bobe so aptly put it. Get out there and drive change without excuses!