People Powered Medicine

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1 People Powered Medicine It s time we take medicine into our own hands Eric D Perakslis PhD and Jesse Dylan

2 Precision medicine defined Person-specific diagnosis Person-specific treatment Requires deep understanding of the molecular basis of each person s disease Requires significant data

3 Health science today (and tomorrow)* Medicine today is built on hundreds of years of individual observations. What if we could integrate and model them instead? *Slide by Magali Haas, MD

4 $1000 genome > $100,000 interpretation Molecular data is not mainstream or accessible When tests are run, patients may not know and may not be informed of tests or results due to ambiguous interpretation Economical analysis tools, processes and services are lacking Data density is also often lacking. It is easy to detect signals but difficult to know which are meaningful Records are often incomplete

5 People 1st, patients 2nd, cohorts 3rd Biomedical research traditionally focused on the greatest unmet needs which often meant the most common diseases Large population studies often omit rare diseases, healthy individuals, children, the elderly, women of childbearing age, etc. These people get sick too! Recent successes in cancer and cystic fibrosis drug approvals show that patients are successfully defining benefit and risk for themselves. people patients cohorts

6 Health data in one place To create individualized treatments and cures we must begin by creating an enormous pool of data Putting data in one place, that no one owns, will lead to better health outcomes for everyone on the planet We are building the open science commons everyone has been talking about and waiting for!

7 People Powered Medicine People Powered Medicine (PPM) is a social movement and well-designed repository to which people can donate their health data PPM then connects this data to the brightest research minds across the globe, to make discoveries faster

8 Open and welcoming PPM embraces the healthy, the sick, individual patients and patient groups of all sizes Each person s data will be individually addressable PPM facilitates one-on-one connections between researchers and individuals

9 How we re doing it Leveraging existing technologies and open-source infrastructures to minimize cost and maximize utility Creating an initial prototype that is safe, secure and HIPPA-certified Utilizing science commons concepts and strategies to integrate fragmented data, make data re-useable and to streamline access

10 Batch loads, genetics, genomics Data Mart Super Friend input input Partner/Admin Portal ETL Toolkit validation validation PPM Patient Portal Work in Process DB federation PPM Repository federation PPM Patient Portal PPM Researcher Portal The PPM Platform Free text, Blue Button files, Pdfs, images

11 PPM initial use-case scenarios Data sharing An underage patient grants permission for use of data A disease organization shares data with PPM A terminally ill patient sets up a data trust A parent wants a cure for her child and deposits data Research studies A researcher seeks behavioral data from PPM for a study on Cystic Fibrosis A pharmaceutical company researcher sets up a study A graduate student researcher sets up a study A graduate student researcher finds a collaborator An individual, with help from her physician, donates data for a specific study

12 Who is involved Leadership George Church, PhD Harvard Medical School Jesse Dylan Wondros, Lybba David Fore Lybba Isaac Kohane, MD, PhD Center for Biomedical Informatics at Harvard Medical School Eric Perakslis, PhD Center for Biomedical Informatics at Harvard Medical School Advisors Jason Bobe, MS The Personal Genome Gwen Darien Cancer Support Community Charles Denman, MD Texas Medical Institute of Technology Susan Desmond-Hellmann, MD, PhD UCSF Stephen Friend, MD, PhD Sage Bionetworks Jamie Heywood Patients Like Me Sharon Terry Genetic Alliance John Wilbanks Sage Bionetworks Jeffrey Flier MD Harvard Medical School

13 Summary Precision medicine requires a tremendous amount of data PPM will be the place where everyone can bring their data to connect with the research community This can be done quickly and effectively using existing technologies and expertise Data will be safe and secure Technology will be shared and shareable We are currently evaluating business model options