In a two year grant project with hundreds of conversations, it’s hard to reflect articulately and summarize the most impactful moments and key things we’ve learned in a single post. Thankfully, we’ve been documenting in this blog along the way, which helped us track progress and helps us now in s...
As of today, if you were to click on OpeningPathways.org, you’d notice a slightly different look than before. This site that you’re reading this blog post on was originally used to announce the Opening Pathways project, and then mostly to host this blog to document and share our work and our team...
When you log into World of Warcraft or any other role-playing video game, your first job or prompt is not to slay the dragon. You are given tasks appropriate to your skill level, which in the beginning may be exploring the village, collecting points by talking to the local farmers, or any other c...
As part of the work we’re focusing on in the grant extension period (between now and September), we’ve been talking about the experience of traditional researchers partnering with patients. One thing we’ve identified is that these partners, like patients, also need resources, support, and encoura...
Tl;dr - We’ve been giving a lot of thought to the meta aspects of the funder-grantee relationship, and this discussion is what emerged. Each month, I have the opportunity to have a conversation with my point of contact, Paul Tarini, at the Robert Wood Johnson Foundation (RWJF). These conversatio...
This is Paul’s post reflecting on the funder/grantee relationship, & my response unedited to his comments. His was written for an internal RWJF audience. You can see my post & his unedited comments in response to that here. Lessons From Funding People The PI on this grant, Dana Lewis, i...
There’s good news and bad news for universities and our researchers. The bad news is that we are not the exclusive experts we thought we were in pretty much any field. While our research grants and centers show interest and dedication to knowledge production, they fall short in understanding the ...
We need to redesign research to involve equitable participation of ALL stakeholders who have relevant interests and perspectives. That motivation is at the heart of our project and is why, as we began thinking about this grant work in the very early days, we began to reach out to talk to, share o...
As Dana highlighted, a problem exists: “patients” and “subjects” feel like they are the subject of conversations about science, not part of those conversations. For all of the reasons Dana highlighted, this is not good for people formerly known as patients/subjects (henceforth, just called a pers...
Earlier this month, I helped prepare a 5,500 word grant application with 68 scholarly references across multiple fields, a one page summary, a data management plan, and a budget to the National Science Foundation (NSF). This was the small version of a potential future grant application, which wou...
(Tl;dr - we requested and received a “no-cost” or calendar extension. This grant now runs through September 2019.) Several months ago I started thinking about whether or not to request a grant extension. You can see my thought process here. However, things have changed over the last few months. ...
(Tl;dr - here’s a copy of our annual report for RWJF from Opening Pathways, with a few extra notes at the bottom.) Most grants have reporting periods & various paperwork they want you to fill out over the course of your grant. RWJF asks for an annual report, and a grant-end report. As we p...
‘I’m a person experiencing X. What solution will help? Will it work? Is it safe? Is it worth it?’ Any person who is dealing with an issue and wants a solution is likely going to implicitly or explicitly ask these questions. Arguably, the central purpose of the health research and clinical ...
Our opening pathways team, other than our PI Dana, had been working together for years before Eric and Dana first spoke at the 2016 Quantified Self symposium. I began working with Eric Hekler in mid-2013, with Erik Johnston in early 2014, and Sayali Phatak joined Eric Hekler’s Designing Health la...
Have you ever listened to live music and heard, prior to the show, the musicians tuning their instruments to one another? In symphonies, the oboe or piano plays a single note (it’s called “concert A”) multiple times for each section of the orchestra. Each section of the orchestra, such as the s...
As a white, middle-class, heterosexual man raised in a place with good public schools and happily married parents, I was born into a significant place of privilege. The American Dream was meant for me as long as I worked hard. As a professor, my role in society is privileged. As the job title im...
Hi, my name is First Last and I’m a Title in the Sub-Institution at Institution. I’m mainly interested in my research topic and how methodology can create new generalizable knowledge about that topic. I’m working on a grant from federal funder to use methodology on my research topic, and a gra...
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...
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...
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...
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...
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...
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 ...
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...
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 ...
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...
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...
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...
When something bad happens, a common phrase in the US is that there were just a few “bad apples,” meaning just a few individuals are to blame when things go wrong. Based on this phrase, the logical solution is to get rid of the bad apples and that should stop bad things from happening. A great...
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”...
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...
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 ...
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...
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 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...