Today we are talking to Steven Keating about his journey as a scientist and patient.
What is your background?
I’m just a curious fellow trying to stay alive! Grew up in Canada (huge fan of maple syrup, snowballs, and I’m sorry if I apologize too much) and currently finishing a graduate program in mechanical engineering and synthetic biology in the USA. More details here if interested.
How did your medical data journey start?
I have always been curious about the world and I often participate in various research studies (which I highly recommend, check out the bulletin boards at a local university as they are always in need of volunteers). In 2007, I participated in a research MRI brain scan and asked to see the data afterwards. The scan showed a small abnormality, though I did not have any symptoms and it wasn’t clear what it was. Follow-up scans by neurologists in 2007 and 2010 did not show significant changes, so I went about my life. In the summer of 2014, I started to smell a faint vinegar smell for a few seconds a day. I went back to the data from 2007 and realized that the abnormality was near the olfactory part of my brain, so I went to the doctor and asked for another scan. The scan showed a large cancerous brain tumor (volumetrically about 10% of my brain) and it was surgically removed three weeks later by an amazing medical team at Brigham and Women’s Hospital. From then on, I have become interested in accessing, using, and sharing the data for making my own treatment decisions, for contributing to research, and for understanding what is happening to me.
When in your journey did you first experience problems related to data access or data sharing?
First off, I want to be clear that the medical teams who treated me have been absolutely incredible and I am very grateful for the amazing quality of care they provided.
While the medical care was fantastic, I was surprised at the lack of data access and toolsets provided to the patient through the hospital system. How come patients have to fill out complex paperwork, wait for dozens of CDs to arrive in the mail, and struggle to even understand the data due to a lack of toolsets, when every doctor at my hospital can easily view and use our data online?
For me, I was also surprised that I was not even able to access my own tumor genome sequence data, even though I donated part of my brain to help research. My doctors can see my genome, researchers on the study can see my genome, but I was not allowed, due to the data being generated on a non-CLIA certified machine. I was stunned. Why did I, as the patient, have the least access to my own data? Currently, the burden is on the patient when trying to access and use data, as there is a lack of standardization and tools. I started asking more questions: Why can’t there be a “Share” button, one that could help break down silos, enhance research, and incentivize patient participation? Why can’t there be a hospital app store? One where you can take your MRI scan, press a button on your phone and use the data. And to incentivize folks, through standard APIs, the free market could develop intriguing medical apps for their data. For instance, apps to generate 3D printed versions of your brain tumor (they made for quite an interesting Christmas tree ornament for my family!) or downloading a biology textbook that replaces all of the images with pathology images of your own tissue! And on the research front, imagine the enormous discoveries that could be made if Facebook had a medical “Share” button available to its 1.5+ billion users.
How are you sharing your data with the research community?
Throughout my medical experience (almost done, fingers crossed, just finished last round of a year-long chemotherapy treatment last week!), I have tried to collect, generate, and share my medical data. For me, the total amount of data I have collected is above 200 GB and includes data from bloodwork, MRIs, pathology images, genetic sequencing (of tissue, blood, and even poop!), treatments, surgery video (a 10 hour awake brain surgery, quite odd to talk with your skull open!), and other various categories. I could not find an easy toolset or framework to host this data, so I posted it online on my website (http://stevenkeating.info/). However, there are lots of exciting leaders in the field for certain data types, such as the Personal Genome Project, Open Humans, Cancer Commons, and PatientsLikeMe. I have contributed data to Open Humans, Cancer Commons, PatientsLikeMe, and I am currently in the process of contributing to the Personal Genome Project Canada (and full disclosure, I have recently become a board member of the non-profit Personal Genome Project).
I am also sharing what I learned through speaking events, such as this TEDxYYC talk, and participating as a policy advocate for patient controlled data through comments on proposed legislation (a few recent examples here and here). As well, I will be joining the Precision Medicine Task Force for the next few months to facilitate policy suggestions.
Who are allowed to use your data and for what?
I have posted my medical data online under a Creative Commons CC0 License, meaning it is public domain and anyone can use it for any purposes without asking permission. This can range from family/friends viewing for personal support, to other patients interested in learning about treatment procedures, to researchers looking for data, and to folks who are just curious. People should be able to control what is shared and whom it is shared with, at their discretion. There are always liabilities when sharing any kind of data and you should understand what risks you are taking and check with family members if the data is linked (such as genetic data) before sharing. As a good example, checking out the Personal Genome Project risks and benefits section is useful. For me, I am comfortable with a CC0 license for the data I have shared online.
Do you monitor how your data is being used?
I do not. I can see that thousands of people are visiting my website each month and downloading data, but that’s about it.
Do you know whether your data was helpful for other patients?
I hope it is! And even if not, it has been very helpful for me and for my family/friends in supporting me through this medical situation.
As for other patients, I have heard personally from many cancer patients and supporters of patients who have used the data or who have been inspired to pursue a similar path in their own treatments. Since posting the data and receiving media coverage, I have heard from thousands of patients via email expressing positive statements and continue to receive weekly emails from brain cancer patients around the world.
Finally, if we look at the broader picture from studies such as Open Notes and research results from shared medical data platforms such as Sage Bionetworks, we can see the powerful benefits of sharing medical data for both patients and research in general.
What would be your data sharing advice for patients? for researchers?
For patients – we need to realize how extremely valuable our data is, to ourselves, to our supporters, and to medical research. Having access can save your life or the lives of family members, and sharing data can accelerate research to help us all. We need to push for more open access, for patient control, and for standardization of data through APIs to enable the free market to develop apps. Next time you are at the hospital, ask for your data. Even if you do not do anything with that data or even if you don’t want to share it, having it is the first step and could always be useful in the future for your own care. Finally, be curious. Get your friends poop sampling kits for their birthdays, sequence your own DNA, and try participating in a voluntary study at a local university!
For researchers – we have to view patients as partners and facilitate simple ways for access of their own data. Look at the potential benefits: more patient engagement, participation, support, higher numbers of patients signing up, data contributions from patients with previously stored data, patient-generated hypotheses, and the ability to share data for the greater societal benefit. Once APIs become more standardized, imagine patients being able to directly find, connect, and re-connect with a research team instead of the current standard difficulties for researchers in finding participants through hospitals. We need to make healthcare a two-way street!
Are you part of a project that facilitates data sharing for genomics or other related research?
Are you directly or indirectly involved in the Open Science movement?
Would you like to be featured on our blog?
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