As part of the White House's Precision Medicine Initiative Summit on Thursday, The Advisory Board Company and more than 40 other organizations laid out their commitments to advance personalized medicine.
Learn about the Advisory Board’s commitment—and how you can get involved.
The summit marked the one-year anniversary of the launch of President Obama's Precision Medicine Initiative, which aims to "enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized care," according to the White House.
President Obama said at the summit, "What we're now seeing is the possibility of us identifying diseases, targeting them, individualizing treatments for a particular patient, and operating with the kind of precision that promises to reduce costs, provide much better care, [and] make our entire health care system much more effective."
As a major component of the effort, NIH says it will analyze the health data of at least one million volunteer participants by 2019 to learn more about how genetic variances relate to health and disease. The agency aims to enroll 79,000 participants this year. NIH on Thursday announced an award to Vanderbilt University and Verily (formerly Google Life Sciences) to study the best means of recruiting volunteers. The agency also announced several other new initiatives to advance the research effort.
"The key to all this," Obama said, "is for us to be able to build up databases, because all of us potentially could have electronic medical records that voluntarily, with strong privacy protections, ... pool together [data] so that researchers, practitioners, scientists can share [information]." If that happens, Obama added, "We may be able to accelerate the process of discovering cures in ways that we've never seen before.
What the Advisory Board is doing—in partnership with providers
A critical component of the overall Precision Medicine Initiative will be ensuring that patients, providers, and researchers can seamlessly and securely share data to advance the development of new treatments and interventions.
To advance that goal, the Advisory Board committed to the White House to build and make available a standardized application programming interface (API) for up to five pilot health care provider organizations in 2016, allowing them to build fast healthcare interoperability resources (FHIR) applications for patients and providers with their own developers or outside vendors. The pilot results will be made publicly available to help other providers deploy FHIR-driven tools.
"The Advisory Board has long believed that the use of a standardized and accessible API is a critical step in allowing the appropriate flow of information across health care stakeholders," says Jonathan D'Souza, who leads product development for the Advisory Board's health care Performance Technologies division. "We're continually working with our peers in the IT sector to develop new and better ways of sharing data."
"Our investments in initiatives like the Argonaut Project and SMART have allowed us to proactively address the barriers that prevent organizations from realizing the full value of their IT investments and improving care for their patients," D'Souza adds. "Today's commitment is yet another opportunity to work closely with providers on the frontlines of care to allow them the access to data necessary for developing new applications that impact important functions like workflow, patient data sharing, and research. We are excited to be a part of this effort and look forward to identifying provider partners for these pilots soon."
Other organizations' commitments
The White House on Thursday also announced commitments from several health systems:
- Boston Children's Hospital, Harvard Medical School, the University of Utah, and other collaborators will partner with patients and their physicians in an effort to dramatically reduce the time and cost it takes to match patients and therapies;
- Carolinas HealthCare System will allow patients to share aggregated clinical and mobile data with researchers, using a new mobile application;
- Cedars-Sinai will advance a new standard of care for cancer therapy, taking into account all of the potential cancer pathways and therapeutic options for patients;
- Children's Hospital of Philadelphia will develop a biorepository infrastructure and data-analysis ecosystem to support patient participation in collaborative pediatric cancer tissue-based research and a shared, open-data infrastructure that will drive precision medicine discovery;
- Hackensack University Medical Center will develop and implement open, vendor-neutral standards as part of the Argonaut Project, and adopt FHIR;
- Inova Health System will set up a new venture investment fund in excess of $100 million focused exclusively on precision medicine;
- Intermountain Healthcare will work with Syapse to provide patients with direct access to their cancer genomic data, including clinical data from their medical records, tumor genomics, treatments, and outcomes, in order to empower patients in their precision medicine journey;
- Ochsner Health System will expand its pilot programs aimed at advancing the use of patient-generated health data to other conditions;
- St. Elizabeth Healthcare will assess and operationalize the use of a precision medicine pharmacogenomics test in 2016 to identify the specific type and dosage of medicine to prescribe based on the patient's genetic profile;
- St. Joseph Health will take steps to enable interoperability within the hospital system and implement bidirectional exchange between systems, patients, and providers;
- Stanford Medicine will launch a consultative pharmacogenetics practice in 2016 so that physicians can refer patients with unusual drug responses or with a family history of unusual responses;
- University of California (UC) Health System will allow its patients to use a comprehensive "Blue and Gold Button" to download their integrated clinical data from across all participating UC sites; and
- Yale New Haven Health will develop tools for patients to access their full medical record, review it, share it with another physician for a second opinion, or donate it for clinical research in 2016 (White House fact sheet, 2/25; Shueh, Government Technology, 2/25; Nather, STAT News, 2/25; Allen, Politico Pro, 2/25 [subscription required]).
Begin your journey to personalized medicine
From risk assessment to shared decision-making to self-management, learn the nine steps your organization can take on the path toward personalized medicine.
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