Join the Keating Memorial Self Research

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Hey everyone, I just wanted to invite you to the Keating Memorial Self Research project that @madprime and I are currently launching – with a lot of support from many people inside the QS community.

To give you some context: On July 19 last year, Steven Keating – an inspiring advocate for patient data access as well as a friend & collaborator of us – passed away. Curiosity was a driving force in Steven’s life. He recorded and shared videos of his brain surgery, explored his cancer’s genetic data, and printed 3D models of his tumor. In his memory and in celebration of his life, we would like to help more people be curious about themselves. In the spirit of Steven’s work we would like to make self-research a collective endeavor – with your help. Our goal is to share reports about what we learned this July, in honor of Steven.

To that end we’re inviting people to share their ideas about self-research projects – questions they have, and potential approaches – and provide support for each other while actually conducting our self-research. By doing our individual self-research as a group we hope to be able to provide support to each other to make our ideas more successful.

This is also a great opportunity to try self-research for the first time – or to pursue a project you already have – by doing it with a small group of people who have diverse skills, lots of experience, and a desire to support you.

We already have a great group of people that participate and are already actively helping each other, including many folks from the QS community, such as @Agaricus @Steven_Jonas @sprague @Beau_Gunderson @Sara @francesblo @Prodigalson2025 @jakobeglarsen (I tried to find all of you, but sorry if I missed anyone!). A big shout out to all of them for being such awesome contributors!

If you’d like to join our little group of people doing collective self-research, you can read more about it on the webpage we’ve created for it. This has details of how to join, our timeline, where to find help, when our next webinars will be etc. For the next webinars:

We hope to see some of you join us in doing self-research together!

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I want to welcome others contributing to this celebration of Steven’s life!

Steven Keating was an inspiring advocate for people having access to their own data: that this isn’t a selfish thing, but that our access and exploration of personal data have the opportunity to be a greater good. He took and shared videos of his brain surgery, made 3D prints of his tumor that he passed around. In a TEDx talk, he asked: Can Selfies Save You? His data held meaning in understanding his own disease, and helped others understand the power and value of doing this.

With the support of his family, we’re extending that core belief: selfies do not mean “selfish”! While Steven had envisaged a “greater good” as something that involved sharing the data itself to advance collective research, Bastian and I have come to see that sharing our process has huge value – what we do and how we do it – potentially much more than the data itself. We wrote about this opportunity recently in a rejoinder to Gary’s vision for Article 27: Collaborating on Individual Discovery

So we’re working closely with Gary and others in Article 27, and we have open communications, community calls & chat – all in the hope that what is done here contributes examples and lessons for supporting and expanding the empowering methods of self research.

This isn’t requiring any use of Open Humans beyond having an account & participating in the forum. It’s about what works for you, sharing what you’ve doing & learning so others know about it and might learn and use it too.

Many folks here are already savvy self-researchers! I hope you consider taking something you were already interested in doing, and making it part of the memorial. :slight_smile:

P.S. Editing to add a link to another moving video featuring Steven & others (Liz Salmi, Open Notes project). https://www.redhat.com/en/open-source-stories/open-patient

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