Can Selfies Save You? | Steven Keating | TEDxYYC
The speaker argues that sharing personal medical data, exemplified by their own tumor removal, can revolutionize healthcare by enabling personalized medicine and providing crucial insights, achieving this by advocating for patient control over data access via tools like an Open API. This potential is demonstrated by the capability to analyze tumor tissue at the cellular level to predict effective drug trials and by successfully inspiring a *New York Times* article and increased patient engagement. ## Speakers & Context - Unnamed speaker: A curious individual, currently a PhD candidate at MIT. - Background: Volunteer for a research study on the brain; underwent an awake, 10-hour brain surgery. - Context for the talk: Advocating for patient-centric healthcare by promoting the sharing of personal medical data, using personal experience as the primary evidence. ## Theses & Positions - Sharing personal medical data is crucial for advancing medical science, benefiting patients, hospitals, and medical science as a whole. - The future of healthcare lies in *patient Centric Healthcare*. - The biggest hurdle is the patient's lack of access to and control over their own medical data. - Progress requires building mechanisms to democratize medical data, comparing it to platforms like Google Maps or Facebook for health. - Patients must be recognized and treated as partners in medical discovery, not just data sources. ## Concepts & Definitions - **Medical Selfie:** Using photos not just for casual sharing, but to document and share complex medical data (e.g., showing a tumor alongside MRI scans). - **Single point mutation:** A specific genetic change, noted as a 'g to an a', that drove the primary mutation behind the speaker's brain tumor. - **Open API (Application Programming Interface):** Described as a "key to your data," allowing controlled third-party access. - **Patient Centric Healthcare:** A system design where the patient has primary control over their data access and utilization. ## Mechanisms & Processes - **Data Collection/Visualization:** Scanning, cutting, staining, and imaging the tumor tissue to view it down to the cellular level. - **Personalized Medicine:** Using specific data (like the *idh1* mutation) to determine which clinical trials or inhibitor drugs might work for an individual patient's specific mutation. - **Data Sharing Process:** The speaker initiated sharing by putting data on a website, which resulted in an MIT Professor inviting them to a specialized talk. - **System Optimization:** Implementing a two-way street where input (patient data) and output (better care/research) can be exchanged, allowing hospitals to refine processes. - **Data Donation:** The speaker donated brain tumor tissue for sequencing to help science, despite initial barriers. ## Timeline & Sequence - **Age 10:** Speaker first looked at own brain during a curiosity-driven moment. - **2007:** Voluntarily scanned for a research study; an abnormality was noted (later rechecked in 2010). - **Last Summer:** Started smelling a faint vinegar smell; linked this symptom to the abnormality's location near the smell center. - **Following weeks:** Had the tumor surgically removed by a team led by Dr. Eno Kiyoka at Briand Women's Hospital during an awake, 10-hour procedure. - **Post-Surgery:** Underwent proton radiation at Mass General Hospital and is on a year of Chemo therapy, with the next round starting the following Monday. - **Recent Success:** Sharing data led to an MIT Professor invitation, a *New York Times* article on April 1st, and subsequent consultations from patients, doctors, and researchers. - **Positive Precedent:** Mention of *Open Notes*, a program in three US hospitals granting patients full access to doctor's notes, where 99% wanted continued access. ## Named Entities - **MIT** — Institution where the speaker is a PhD candidate. - **Professor Nar Oxman** — Researcher under whom the speaker works. - **David Wallace** — Researcher under whom the speaker works. - **Briand Women's Hospital** — Location of the surgery. - **Mass General Hospital** — Location of proton radiation. - **President Obama** — Attended the precision medicine announcement on the first day post-treatment. ## Numbers & Data - Tumor size: Took up about **10%** of the speaker's brain. - Tumor location: Frontal left lobe. - Surgery duration: **10 hours**. - Data size: Over **100 gigabytes** of data. - Prognosis for Open Notes: **99%** wanted continued access; **4 out of 5** would choose a future provider based on access; **70%** reported taking better care of themselves. - Apple Research Kit: **50,000** users joined in the first week; **over 75%** opted in to share data. ## Examples & Cases - **The Tumor Visualization:** Showing a 1:1 size copy of the cancerous brain tumor, and subsequently imaging a slice of it to visualize the *idh1* mutant protein at the cellular level. - **Future Tool Visualization:** Using the proton accelerator to take selfies using protons fired at over **600 million km per hour** at the face, and using multi-material 3D printing to model new surgical tools. - **The 'Before and After' Skull:** Comparing the intact skull with a section surgically removed, demonstrating the scope of the operation. - **Emotional Support:** Receiving videos from friends and family, including clips from *Steve* and *Jimmy Kimmel*, which provided medicine during tough times. ## Tools, Tech & Products - **3D Printer:** Capable of printing with metal or glass, and used to print microfluidics structures housing specialized bacteria. - **Proton Accelerator:** Used in conjunction with 3D printing to take selfies using high-energy protons. - **Open Notes:** A project providing patients with full access to doctor's notes in US hospitals. - **Apple Research Kit:** An open platform designed to share data with medical researchers. ## References Cited - The *New York Times* article published on **April 1st**. - The work done by **Professor Nar Oxman** and **David Wallace** in the field of design/biology. ## Trade-offs & Alternatives - **Current System Drawback:** Hospitals use dozens of CDs for MRIs without tools to interact, share, or use the data; technical reports are hundreds of pages long. - **Legal/Access Barrier:** The speaker still does not have access to their whole genome sequence, despite an informed consent form listing the right to request it. - **Data Control:** If one doesn't want to share, they don't share; but if they want to use/share, mechanisms must be built around patient control. ## Methodology - **Data Aggregation:** Compiling vast, disparate personal medical data (MRI, pathology, genetics, surgical records). - **Advanced Visualization:** Employing 3D printing and proton-based imaging to materialize microscopic or conceptual data structures. - **Advocacy/Crowdsourcing:** Creating a public platform (website) to aggregate and share personal health journey narratives to spur broader systemic change. ## Conclusions & Recommendations - The paramount need is a "hospital share button" to facilitate a two-way street in healthcare. - The immediate technical solution is establishing an **Open API** to act as a controlled key to patient data for third parties. - The ultimate goal is to use the principles of data sharing to "democratize medical data" and improve systemic efficiency for all. ## Implications & Consequences - **Disease Cure:** The ability to share data could potentially allow for curing diseases through collaborative research. - **Personal Health Monitoring:** A patient's watch could theoretically diagnose and save their life. - **Human Support:** Personal data generated "support," which the speaker notes is often lost on researchers but is crucial for survival and recovery. ## Verbatim Moments - *"a lot of people think selfies are selfish right but what if in the future could sharing our selfies actually save us"* - *"if you go down to the cellular level we can actually get down and see the idh1 mutant protein and that's right here and the genetic code behind it there's a single point mutation it's a g to an a that's what drove the primary mutation behind my tumor"* - *"I asked if it could be videotaped and they said sure"* - *"I was able actually in the proton accelerator to take selfies using protons which are fired at over 600 million kilm per hour at my face"* - *"why do patients have the least access to their own data we're put last in line"* - *"we need a voice we need patients as partners"* - *"if this happens we could then have Google Maps for health we could have Facebook for health we could have Dropbox for health"* - *"the world is a lovely Splendid and fascinating place but most of all to me it's beautifully curious"*