Dana Lewis – patients are experts

I was ecstatic to learn that Dana Lewis, who designed the OpenAPS system with Scott Leibrand, was going to be a keynote speaker at the Australian Health Informatics conference #HIC18 in Sydney.

I was very fortunate in being able to meet her and Scott, and the brilliant group of Sydney loopers, at the Opera House bar the day before the conference, and to sit in on her talk.

Patient as innovator

It was a breath of fresh air to hear Dana Lewis talk about patients as experts and innovators.

Dana’s t-shirt has the OpenAPS oref0-determine-basal code on it

In her own words:

“We get a lot of pushback. We are told ‘you are not a clinician, you are not an IT expert, you are not an engineer. You are not a this or a that’. We often focus on the roles. Do your role, don’t cross the lines.”


“And as a patient that’s really frustrating because as a patient we get that we are not professionally working in this space being paid to do this but this doesn’t mean that we’re not engaging and designing and developing and doing research and science.

We have to. This is making our lives better. Our other choice is to sit there and do nothing and suffer and wait for one day when something will be better.”

Patient as expert

What we think everyone else knows – What people think ‘professionals’ know – What patients actually know

“The patient syndrome trap is hugely prevalent everywhere around the world in healthcare. We assume patients know little tiny bits of information and healthcare providers and everyone else knows way more. But that’s wrong.

The reality is that yes health care providers, IT, medical device companies, pharma and the government know a lot but we patients know so much more.

The difference is often in the process, the priorities.

Instead of focusing on the overlap and talking about whose role is doing what, the best partnerships, the best healthcare is going to happen, we get the best of all worlds when we all work together.”

Learning not to wait

Dana is currently principal investigator on a research project “Learning to not wait: Opening pathways for discovery, research, and innovation in health and healthcare.” She is researching how the data and innovation approach in diabetes can help other patient communities

You can see Dana’s posters and presentations from the 2018 American Diabetes Association Scientific Sessions at her DIYPS blog:

Other patients who are not waiting

Mike Morris has written a brilliant post on the Health Intersections blog about how he got cancer and decided he also was not waiting. He created his own integrated digital health dashboard. This meant his data held in various types of health records could be consolidated and available in near real-time so that he could work with his oncologist to course-correct in the middle of chemo cycles rather than going through whole chemo cycles and then waiting for a scan. He talks about having ‘personalised medicine’ rather than ‘a life of chemo’ and about treatments based on predictive outcomes and trends. Sound familiar?

His story and his efforts to create a better system remind me so much of Nightscout and the open source artificial pancreas community #WeAreNotWaiting. His diagram of the protocol treatment chemo cycle showing the 10 minute doctor’s visits followed by the expanse of time between visits where there is no monitoring reminded me a lot of traditional type one diabetes healthcare. It is very exciting to see this changing.

Tidepool: step right up!

Very interesting news that Tidepool, an open data not-for-profit made up of people who either have type one diabetes or are related to someone who has type 1 diabetes, is to deliver an officially approved, FDA regulated app based on the DIY tech of Loop. The fact that  Katie DiSimone and Pete Schwamb have joined the Tidepool team is fascinating too. Patients as experts and innovators? Absolutely.

The first pump expected to work with the Tidepool Loop app will be Omnipod, which should be super appealing to a historically difficult to reach group – teenagers. Other pumps will follow.

And what about my rant in my initial post about interoperability?

As Howard Look of Tidepool says “this pushes everyone forward, to thinking about interoperability and interchangeability, and that makes for a better world for people with diabetes.” What a sigh of relief after all these years. It’s going to be very interesting to watch the diabetes tech space over the coming years.

Interoperability update, March 2019:

Tandem pumps now have iPump status.

Tidepool are working on iCGM status. To read more about what it means, check out Tidepool’s blog.

Ypsomed have partnered with JDRF as part of JDRF’s Open Protocols initiative. In the future this will enable the Ypsopump to be used with smartphone based apps for automated insulin delivery.

myglu.org has a brief overview of how these interoperable systems differ from the approach taken by Medtronic, which has its own ecosystem.

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