mHealth devices and platforms will play a crucial role in President Barack Obama’s Precision Medicine Initiative, as healthcare looks to make medicine very personal.
Unveiled a year ago by President Obama during his State of the Union Address with the mandate to “deliver the right treatment at the right time to the right person, taking into account individuals’ health history, genes, environments and lifestyles,” the $215 million program features six key principles:
- Enable consumers to access, understand and share their own digital health data;
- Make precision medicine available to everyone;
- Engage consumers in research projects and make those results easily available to them;
- Promote strong privacy and data security principles;
- Invite consumers to use data and technology tools and collaborate with other parties, such as healthcare providers; and
- Advance and scale precision medicine initiatives in clinical settings.
"My hope is that this becomes the foundation, the architecture, whereby 10 years from now we can look back and say we've revolutionized medicine," President Obama said during a White House summit this week, during which he noted he’s asked Congress to delegate more than $300 million next year for the effort.
"We may be able to accelerate the process of discovering cures in ways we've never seen before," the President added.
The key aspect to the precision medicine initiative is that it relies on patient-centered medicine – enabling the consumer to not only access his or her medical data, but generate and contribute more data from wearables and other devices to fill out the medical record. The consumer would then work with other stakeholders – healthcare providers, researchers, pharma – on studies and projects to create tailored clinical courses of action for everything from cancer to rare diseases.
Last July, the National Institutes of Health noted just how important mHealth might be to the initiative.
“Large studies on health and disease typically collect health and lifestyle data on participant volunteers from medical records and extensive phone or paper surveys,” the organization posted on its website. “The Precision Medicine Initiative is considering using smart phone and wireless technologies to collect some of this information. These devices could provide the ability to track health behaviors and environmental exposures much more frequently with minimal burden on participants.”
“For example, participant volunteers could respond to a few questions multiple times per day via their smart phones about their health status, activities, emotional states, etc.,” the post continued. “Location information from their smartphone or wearable device could be used to assess daily activity and also detect exposure to air pollution, etc. Wearable devices can assess heart rate and other physiological states as well as physical activity levels. Smartphones also could keep participants connected to the study, providing feedback on the data they provide as well as the aggregate data and findings of the study.”
This week’s White House event served to bring everyone up to date on the first anniversary of the initiative’s launch, and shine the spotlight on the many different organizations, health systems and private companies taking part. Among the federal agencies involved:
- The NIH is partnering with the Health Resources and Services Administration and several health systems to engage underserved populations in the Precision Medicine Initiative Cohort.
- The NIH and the Office of the National Coordinator of Health IT will be working with EHR developers Epic, Cerner, Allscripts, athenahealth, McKesson and drchrono to advance “Sync for Science” pilots that integrate and scale data access and donation for precision medicine research.
- The ONC and the National Institute of Standards and Technology (NIST) are developing an NIST Cybersecurity Framework that supports precision medicine.
- The Departments of Veterans Affairs and Defense are joining forces to bolster the VA’s Million Veteran Program, currently at 450,000 veterans, by adding active-duty personnel who wish to participate in the research program.
Among the more than 40 organizations, health systems and companies taking part in the initiative are several that are well-known in mHealth and telehealth circles. They include:
- Vanderbilt University and Verily (formerly Google Life Sciences) are using an NIH grant to launch the first phase of the Precision Medicine Initiative Cohort, focusing on the creation of a network of 1 million consumers to share data and engage in research trials.
- The Advisory Board Company is creating a standard application programming interface (API) for as many as five health systems, allowing them to create fast healthcare interoperability resources (FHIR) applications for consumers and providers within the year.
- The American Medical Association is committing to, among other things, “helping physicians leverage electronic tools to make health information more readily available” for precision medicine projects.
- The Carolinas HealthCare System, Hackensack University Medical Center, Intermountain Healthcare, Ochsner Health System, St. Joseph Health, University of California Health System, Yale New Haven Health, Cedars-Sinai, Children’s Hospital of Philadelphia, Inova Health System and UPMC are all engaged in programs that promote consumer engagement, data collection and collaboration for precision medicine initiatives.
- Harvard Medical School is working with the University of Utah, Boston Children’s Hospital, recursion Pharmaceuticals and Pairnomix to launch the Patient-Empowered Precision Medicine Alliance, designed to “partner with patients and their physicians to dramatically reduce the time and cost to match patients and therapies.”
- The College of Healthcare Information Management Executives (CHIME) and OpenNotes are partnering to accelerate information-sharing between providers and patients.
- Surescripts will leverage its Medication History and National Record Locator Service to enable consumers to “contribute their most current medication information and other health information” to precision medicine projects.
- IBM and the New York Genome Center are creating an open cancer data repository, using Watson’s health platform.
- Cornell, Open mHealth and touchlab will soon release ResearchStack, an open source framework for Android users involved in app-based research studies.
- Validic is working with its healthcare partners to enable consumers to share patient-generated data on the company’s digital health platform, including allowing them to donate information from their patient portal to research through an “opt in” form.
- Sage Bionetworks will open its ResearchKit-enabled mPower study on Parkinson’s disease to allow participants to share their data with “qualified researchers worldwide.”