Yesterday I did a short presentation for a conference session titled Patients 2.0, which is part of the Health 2.0 conference. Since I wasn’t given a lot of notice, I threw together a presentation relating to my rant about the diagnostic process for celiac disease – loosely based on my blog post. The question each speaker was asked is “if you had a magic wand and could change anything about healthcare (except making it free), what would it be?”  Given the short notice, I expected a more informal session. It turned out I was on a stage talking behind a podium. Fortunately, I’ve done this enough lately, that I’m comfortable with it. I also have enough passion about my topic that I can speak mostly coherently about it.

The key take away from my presentation is that I’d like to see diagnostic processes that account for the whole patient story, rather than processes that are based on protocols that don’t see the patient as a person.

Tal Givoly (of Medivizor fame), who I met for the first time during the break, kindly took a few photos of me presenting:

@rjhogue at Patients 2.0 abt her diagnosis journey and nicely generalizing this for broad applicability. #health2con pic.twitter.com/rLf2rB1Q2Z

— Tal Givoly (@givoly) October 4, 2015

This conference is drastically different then Medicine X, and yet has a vary similar audience. They are both conferences about the intersection of healthcare and technology. Both conferences also have a strong patient presence. They just take very different approaches to how they include patients into the discussion.

After the patient / caregiver panel (which is the one I was on), there was another panel on patient innovators. It was really powerful to hear people speak about their personal patient experiences, and how those experiences drove them to innovate in the healthcare space. The speakers were strong advocates and spoke with passion.

One such speaker was Brian King who created an App to help others with CF navigate healthcare (see https://itunes.apple.com/us/app/my-fight-against-cystic-fibrosis/id918730808?mt=8).

Another was Roger Holzberg who spoke about creating an Infusionarium – a pediatric infusion center that allowed kids to have meaningful experiences while undergoing treatment. He mentioned that in there needs analysis / exploration stage they discovered that young boys want to learn more about space exploration and girls want to connect with the ocean. What I found interesting with that is that my ‘happy place’ was snorkeling in Hawaii. So, even adult girls find happiness and connection with the ocean! I loved how the infusionarium not only provided an entertainment space, it also provided connections – they had real Nasa scientists talking to the kids in the infusion center. That was pretty cool.

This was me at this time last year:

It actually made me see another opportunity for patent empowerment – the time spent in the infusion center can be wasted time. If you are well enough, then the time could be used to do something rather than passively waste away hours. It is a balance. I spent a lot of my infusion time working, writing, researching … although I also spent a fair bit of it watching TV. I was just lucky that they had really awesome Internet connections in the infusion center. I could be connected and work as much as I felt able to.

One thing I’m struggling with at this conference is the need for better business cards. At Ed Tech conferences and even at MedX, we used twitter as a way to connect. Twitter is less prevalent at this conference (and it is more difficult to tweet as there are no tables in the session rooms). However, for this conference I’m much more interested in exploring the Exhibits. I’m less interested in the sessions. I actually want to spent some time walking through the exhibit hall, talking to people, and seeing what innovation in healthcare looks like.