Recent Posts

What do people know (that science/healthcare is undervaluing)?

9 minute read

People formerly known as patients (henceforth called people, see this post) know things about themselves and their context that professionals don’t know. Pretty obvious, right? While it’s obvious, the implications for health and healthcare are really important. Why? As discussed in another pos...

Spectrums of perspective

5 minute read

A story and a few examples about the different perspectives we all have in healthcare. A few weeks ago, I was pushing my nephew on a swing at the playground. Another little girl also toddled over behind him, and asked her dad to lift her up at the same time I was setting my nephew into the sw...

What I want to tell others doing patient-driven work

7 minute read

I’ve recently had the opportunity to talk to several individuals who are working on patient-driven projects in a variety of categories. Some of the things I’ve shared with them are things I’ve learned that I wish I had known when I started this grant work, or that I wish I’d known even earlier wh...

To extend (the grant) or not extend?

5 minute read

Our grant is currently designed as an 18-month project. This is something that was suggested to us by RWJF; and so we designed the work for that time frame. At the start of the grant, one of the things I did was ask Eric and Erik to give me a primer on what a PI was supposed to do. I remember the...

Reflections on data science & related processes

10 minute read 3 Comments

For the last several months, we have been working on the data science component of this project. We have invited people from the diabetes community who are interested in partnering with data scientists (our research team) in order to answer questions of interest to the community. Some projects ha...

First Lessons learned as a patient PI

20 minute read

I am the Principal Investigator for the Opening Pathways project, which means I’m responsible for guiding the science of this work to ensure we can translate it into valuable, long-term insights. My team - and my grant officer - have learned that I’m probably the least patient PI - even though I ...

Spreading scientific knowledge

5 minute read 1 Comment

In the past week, I returned from presenting some of our team’s data science work and some of my other non-Opening Pathways work at the American Diabetes Association’s 78th Scientific Sessions. I started describing to the rest of the Opening Pathways team some of the work I had done to package, p...

Honoring agency

6 minute read

A common role for health professionals, including researchers and healthcare providers, is to protect and empower patients. For example, researchers commonly test if interventions “work” so that patients can know what solutions are useful and safe vs. not. Healthcare providers commonly take what ...

Designing a meeting for non-traditional and traditional stakeholders

12 minute read

Part of our project includes gathering diverse participants to talk about the barriers and opportunities for opening pathways. Designing this meeting was important to me. And we spent a lot of time focusing on it (probably to the surprise of the rest of our research team). Everything from the rig...

Data-driven disease

2 minute read

I was recently describing to a reporter why I think some of the lessons we’ve learned from OpenAPS & related diabetes efforts can be applied to other health communities. “Although diabetes is a data-driven disease,” I said, “I think there are –.” The reporter interrupted me and asked, “What d...

Patient “Engagement” in Research

2 minute read

As we embark along new pathways for discovery in health and healthcare, we are glad to encounter fellow travelers. One new voice to my ears is Jennifer Johannesen, who expertly describes a naked emperor behind the rhetoric of patient engagement in research. Much like my experience with urban plan...

The Individual Evidence Pyramid

11 minute read

Evidence-based medicine is increasingly the primary way in which individuals are receiving care and support. Advocates for the approach (Sackets et al 1996) defined evidence-based medicine as: This definition sets up two sides to evidence-based medicine. One is focused on “external evidence”...

Cultural Consciousness

1 minute read

It’s easy to take culture for granted, because it can be so central as to become invisible. For example, “American” culture is mostly invisible to many Americans because they can take it for granted. It is usually when encountering the culture of other countries that Americans experience “culture...

What you’ll see on this blog + Meet the team!

less than 1 minute read

As part of the initial phase of this project and some of the behind the scenes work, our team has had regular discussions about the implications and touch points of our work. As these discussions have evolved, we’ve felt it is important to document & capture our current thinking, and be able ...

Work with the Opening Pathways Data Science Team

1 minute read

For the first few months of this project, we’ve been working behind the scenes to establish the building blocks of this project. Much of this has included putting together the necessary pieces to enable our Data Science team to be able to work with the community. This work has included: Submi...

Student to Support Data Science Team

less than 1 minute read

We are looking for a self-motivated undergraduate student to join the on-call data science team for the Opening Pathways research project, which focuses on assisting patients in performing data-driven scientific research. The ideal student has past experience with some form of coding, data visua...

Everything is open source

1 minute read

Everything in this project is and will be open source. Most people think that means the final output of the project will be open source. But it also means all of our work “products” and efforts along will be open source as well. This website (www.OpeningPathways.org) is included in that. I kne...