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Patient-Centric Data to Speed Precision Medicine

Courtesy of Portable Genomics

The San Diego, California start-up, Portable Genomics, bridges two potentially transformative forces in health care. It spans an industry keen on accelerating precision medicine and patient advocacy groups pushing for advances in care.

What sets Portable apart is its innovative platform that gives patients rapid, private access to their medical, genomics, lifestyle and behavioral data on their mobile phones and clouds. Portable’s NuMe app also captures pathology, phenotype, treatment and visit data. The company can customize the app, adding fields that patients suggest.

“Portable offers a 50/50 revenue split with patients”

The system includes a particularly important feature—patients own their data, which can only be shared or sold with their permission. “Portable offers a 50/50 revenue split with patients when the data are monetized,” Patrick Merel, PhD, Portable’s founder and CEO, told MedicalExpo e-magazine in an interview. “No other company is doing that.”

Merel, who spoke at the Paris Doctors 2.0 conference in early June, puts the value of his business model in context. “Personal health data is a new asset for precision medicine and the time is past for it to be shared for free with industry. It’s far too valuable.”

Putting the Portable solution in industry-wide context, Merel added, “It accelerates patient recruitment and lowers the cost pharma pays to recruit patients, probably by a factor of 10. Also, by having patients included in the revenue model, we incentivize patients to participate and keep sharing their data, and de facto, we reduce the cost and solve the problem pharma has to keep patients in studies and/or clinical trials.”

Patient Engagement is the Driving Force

Portable’s app is in beta testing. It has been deployed to a small group of cystic fibrosis (CF) patients considered digital opinion leaders. Portable has identified these patients through its partnership with, a nonprofit.

” Our business model helps us bring in device makers and data providers.”

“Cystic fibrosis patients can be on 30 or more medications and need tools to monitor their biometrics and treatment. Additionally, our business model helps us bring in device makers and data providers, who, in turn, offer CF patients access to new personal health and medical data.” For example, in the CF pilot phase, a predefined customized set of modules collect data on mutations, microbiology, spirometry, lung microbiome, hospitalization, treatment, nutrition, supplements, mood, demographics and outcomes. Users are able to add data fields.

Portable sees its work with cystic fibrosis as laying the groundwork for more cohorts. It is in discussions with over 600 ovarian cancer patients and with a patient community of 7000 with progressive supranuclear palsy, a neurodegenerative disease. “We hope our approach will go viral with patient advocacy groups once our pilot study is done,” said Merel.

Good Timing

Public and private entities around the world are investing heavily in data-driven medicine and precision health and medicine. In addition, technical advancements permit large data sets to be stored cheaply, electronic medical records are proliferating across the United States and mobile health tracking is now within the reach of many Americans.

Today, patient groups are insisting that they be  “at the R&D table” and want to learn how they can stay healthy and track their health, physical activity and exercise. And that’s not all. Through Facebook and Twitter, patient communities offer an unprecedented way to collect information on gaps in care, patient-centered priorities and other factors.

Portable’s entry into this market also coincides with key molecular technology advancements. Targeted therapies look like they are here to stay and their development requires individual assessments. For example, cell-free DNA analysis is replacing invasive biopsies. These are just some of the many new technologies that permit identification of new biomarkers and personalized medicine.

About the Author

Laura Newman is a New York-based medical writer that writes frequently about medical technological advances and health policy. She writes for the medical trade press, national health entities, and health care insurers.

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