Anil Sethi, Founder Citizen and ‘Big Thoughts About Small Data’ session chair at PMWC 2018 Silicon Valley: “We’ll do well, by doing good. Together!”

Anil Sethi lost his little sister Tania on September 11, 2017 to metastatic breast cancer and through that experienced the caregiver’s journey, firsthand. Anil has an interesting background: investor, mHealth lecturer and mentor to StartX, UCSF, Cancer Commons, and past board member of Johns Hopkins Medical School/SON. He has been working in healthcare as a serial entrepreneur since many years founding several startups with the vision to address the data access problem in healthcare. His most recent endeavor was Gliimpse – a secure data platform that attempts to solve the problem of medical data aggregation and standardization, and provide a platform where consumers can share their own medical records and other information – which he co-founded in 2013 and was subsequently bought by Apple in 2016.

We had an opportunity to discuss with Anil the session he has planned for PMWC 2018 Silicon Valley, January 22-24. Here is what he had to say:

Anil Sethi: “It’s fine to talk about cutting edge immunotherapy, biomarkers for early detection of disease, and the implications of ‘big data’. But there are dirty little secrets surrounding big-data in healthcare…. we’ve got to think much smaller. Small data; N-of-1; The individual. Collected patient by patient, seven billion times over.”

HIPAA-leveraged access to your own health data to facilitate and enhance your clinical treatment and enable a broad ‘donate-your-data’ (DYD) ecosystem is expected to help speed up the advancement of research and development of therapeutics targeted to cure diseases, starting with cancer. Simply working forward from wet chemistry in the traditional approach is too slow. Though well intentioned, it’s limited in its ability to directly impact the lives of those in need, today. As Steve Jobs would say, “No no no, we’re thinking about this all wrong.” With so much at stake, affecting so many directly and indirectly, we must think differently. Let’s enroll all the world’s citizens in our fight against diseases, starting with cancer.

If computational biology is meant to successfully empower clinical and research initiatives in our fight against cancer, it must intersect with data gathered from citizens living in every corner of our planet. Liquid biopsies, big data, AI and Machine Learning are amazing advances spread across the technology axis. Yet, real change will only come at the intersection of technology and the human axis. When paired with actual people, computational medicine can become a reality at the intersection of science and patients, researchers and clinicians.

The track spearheaded and co-organized by Anil addresses the challenges of patient data access, self-reported data, and regulatory solutions serving both human and AI/ML computational needs and will outline a different way of thinking about the future. In essence, the proposal offers a different plan of attack on cancer that will empower people, patients, and professionals. The first hour promises four exciting 15 minutes presentations followed by a provocative Q&A session with the same panelists.

Session #1: A patient-mediated mHealth solution to legally collecting and sharing clinical data

Presenter: Anil Sethi

Physicist Max Planck suggested, “in the correct formulation of the question lies the key to the ‘correct’ answer.” The healthcare industry continues their slog in trying to control siloed patient data. They continue to ask incorrect questions and thus miss the key that connects better outcomes with lower costs—the patient. We’ll discuss the specifics of a model of patient mediated data collection and sharing, and how patients may be the key to accelerating and unlocking genomic data for curative discoveries.

Session #2: Regulatory implications and a practical understanding of patient data access and sharing  

Presenter: Deven McGraw

HIPAA gives patients a right to copies of their health information – including a right to have that data forwarded anywhere – to another treatment provider, a caregiver, or a research initiative. This right is reinforced by financial incentives (such as “meaningful use,” MACRA, and other outcomes or value-based payment initiatives) that reward the sharing of data with patients. We’ll clarify patient access rights as well as security and privacy, looking specifically at how physicians, researchers, and institutions can increase patient engagement while benefiting from data donations in return.

Deven McGraw previously served as the Deputy Director for Health Information Privacy at the HHS Office for Civil Rights (OCR) and the acting Chief Privacy Officer for the Office of the National Coordinator (ONC) for Health Information Technology. In that capacity, Deven was the chief regulatory guidance and compliance officer for HIPAA in the United States. Deven also advised PCORNet (the Patient Centered Outcomes Research Network), as well as the federal All of Us Research Initiative, on HIPAA and patient donated data research initiatives.

Session #3: An informatics driven data-model for the semantic interoperability around cancer 

Presenter: Brian Carlsen

The previous sessions have addressed why patients are the natural solution to solve data sharing and why federal policies can be leveraged for same. However, having an API (e.g. HL7-FHIR) only solves the syntax problem. There continues to be a semantic mismatch between health data elements such as lab results where some reporting systems may call it Hemoglobin while others call the same element HGB or Hemob, and standard health terminologies may call it something else. Cancer serves as our backdrop to illustrate semantically matching like-terms in service of computational and ML/AI data needs.

Brian Carlsen is a clinical terminologist, previously for Apple Health. An advisory group member of SNOMED, he was an architect of the NLM’s UMLS and the NCI Metathesaurus, designed to help solve for semantically interoperable health records. He’s a software developer of web-based and open source tools for the leveraging of clinical terminologies across healthcare domains including labs and medications. He is an expert in creating computable representations of health data as a consistent way to index, store, retrieve, and aggregate medical data across payers, providers, and consumer devices.

Session #4: Partnering directly with patients to accelerate translational cancer research

Presenter: Tania Simoncelli

We discuss the value of computationally accurate health records shared from extraordinary responders to help develop methods for precisely matching patients to new drugs or new therapies. The implications of both large numbers and outliers, to move from 5% cancer patient enrollment to 80% enrollment is an exciting possibility. And how technology, social media and cultural changes now provide a new opportunity to engage cancer patients and directly partner them with researchers.

In 2005, Tania Simoncelli spearheaded the development of the ACLU’s successful lawsuit challenging the patenting of the BRCA genes (AMP v. Myriad, decided by the U.S. Supreme Court in 2013).  She has continued to champion open science and the rights of patients to access their own health information ever since, through policy roles at the FDA and the White House Office of Science and Technology Policy, as Executive Director of the Count Me In initiative at the Broad Institute, and in her new role as Director of Policy for Science at the Chan Zuckerberg Initiative.

Hear from 300 speakers and 60 sessions in 5 tracks: Program