Data is king. We all know and understand that the group that controls the data, controls the outcomes. With regard to patient data, the same is true. Unfortunately, the people entitled to their own data – the patients and patient groups— are not necessarily the ones with control of the data. Often the control lies with a university, pharmaceutical company, or research firm. But patients and patient groups are starting to take control of their own data. Helping them do that is the non-profit organization Global Genes, who in partnership with the Chan Zuckerberg Initiative, is hosting a series of workshops to help patient groups understand the what’s, how’s and why’s of collecting, owning, using, and sharing data that will advance their cause.

A series of day-long workshops are underway to help patient leaders understand how to take control of their own data and how their data can help them succeed. The first workshop was held May 3rd and the second on July 18th. Both workshops  are now available to watch for free online at https://globalgenes.org/data-diy/

The first workshop looked at the “why’s and how’s of data collection” and the second workshop discussed “data trusts and governance”.

The third and fourth workshops will focus on “developing collaborative research networks (October 24, 2019) and “data sharing for science collaboration” (early 2020).

This week, I talked to Christian Rubio, vice president of Community Development and Digital Engagement at Global Genes about the workshops and the incredible value they are providing to the patient community.

Zeal Access: I watched the second workshop last week and was really impressive on how well you were able to provide valuable tools for so many different groups, all of whom are at different levels of development.  How did you manage to pull that off?

Christian Rubio: I think it’s a testament to the whole team. We’ve got an incredible team of content writers,  interviewers, program managers, and other staff at Global Genes to help give the workshops that ‘Global Genes’ feeling. Power, Inspire, and Connect are the three key elements to all Global Genes events and that mindset was baked into how we planned these workshops.

One of the things we wanted to do right off the bat was to make sure that this program had a sense of continuity that every foundation leader can connect with, regardless of what steps there at and what age their organization is. Everything from the mothers and fathers who are just starting out, to advanced established organizations who may be rethinking their technology and research and development participation strategies. So that was definitely something that we’ve known from day one that we had to be able to speak to — pretty much the whole spectrum and bring something to them.

Why should patient groups watch the Data DIY workshops?

If you are a patient, a patient care provider, or a supporter of someone who has been  through the frustrations of rare and chronic disease experiences,  you know that way too much of your own data, or your own fate, rests in a scientific process or scientific investigation regime that has lived outside your own reach and control.  Patients have been beholden for decades, if not centuries, of scientific investigation that has been a very  paternalistic environment.

We now live in a world where data is at our fingertips and we do have the right to own and control our contributions to science.  We start there – teaching everybody their rights to own their data.

Secondly, for foundations and larger organizations, the series is really designed to arm people with the knowledge and action planning capabilities to take that control and harness it – to drive scientific collaborations,  scientific investigation, and ultimately new treatments therapies.

Also, many organization leaders who are thinking about their data collection strategy will benefit from the workshops. Maybe they were originally rooted in just providing support services or an organization that may have a data collection strategy but have been really just kind of beholden to the ups and downs of R&D; and translational research and basic research data has been captured by other parties in the system that they haven’t been able to control or be privy to. The workshop helps them learn how to kind of take more control of that.

What Was the Inspiration to Develop the Data DIY Workshops?

Years of frustration was the inspiration. We have over 600  foundations in our alliance and many have shared their frustration with the scientific process. They have been doing the back-breaking work with all types of fundraisers to generate interest and then get researchers interested to doing some work on something that was outside their purview – and then if it fell apart or if funding dried up, the patients were left high and dry.

Empowering these foundations became something that was almost self-evident after a lot of conversations with them. Then it became a matter of how and what needs to be done.

Also, the Chan Zuckerberg Initiative has been a great supporter of this program.

Can you describe  some  eye-opening incidents that have happened at the workshops?

It was really eye-opening at the first workshop when people who took the pretest – and not 100% of them, not even 90% of them, necessarily understood that they truly owned their data and that they have the right to access it at any time from their from their doctors and research collaborators.

At the second workshop, there were a number of great presentations but one point that really stood out was when John Wilbanks and Megan Doeer from Sage Bionetworks really opened everybody up to this notion that medical scientific research throughout history,  at least in the past 150 years, has not been designed for patients despite the fact that they are researching diseases. Scientists have been designing scientific investigation for the scientists’ perspective. And it is the obligation of a patient and a patient organization to drive that research.

The tools are cheaper than they’ve ever been and patient groups have the capacity to design a better trial, a better research project than your typical researcher can because of what the patient foundations know about their own population.

When is the next workshop?

The next workshop is in Philadelphia on October 25th. We convene on the evening of the 24th but the 25th is the main educational day. That will be data DIY number three in which we’ll be taking an even deeper dive into developing your collaborative research network.

The first two workshops can be found online, as well as downloadable workbooks, at  https://globalgenes.org/data-diy/