Recently, PHEMI requested the Foundation for eHealth Initiative to conduct a series of interviews with executives at leading provider organizations across the United States, to assess the state of the field in precision medicine. The adopters ranged from early adopters of precision medicine who have been in this space for up to fifteen years, to those who are just starting to develop their genomics research arm. The findings shared in this report provide insight on how clinical and genetic data is used and managed, as well as the challenges providers face in genomics research and precision medicine.
The central finding in this report is that all of the organizations interviewed want to leverage clinical and genomics data to strengthen their core competency of caring for the patient. Highlights of key trends and challenges are listed below.
- Investments in precision medicine programs are still evolving.
- Use cases are diverse; pioneering providers are finding new ways to derive meaning and value from genomic data to drive clinical benefits.
- Data storage needs are evolving.
- Providers are adopting new technologies to handle new data demands; use of Hadoop is becoming common.
- As a top priority, providers want to use data for real-time clinical support.
- Risk management, privacy, and security are key considerations.
- Providers are concerned about de-identification.
- Acquiring data in a ready state for analysis (data acquisition) is a challenge.
- Data management is a challenge for some organizations using big data.
- Providers want to explore and mine unstructured and non-clinical data.
- There is a shortage of specialized skills, especially data science skills.
- Providers need better tools to make the most use of big data.
- Providers want their genomic data systems to be interoperable with their electronic medical records systems and other internal clinical systems.
- Providers want to be able to share data, and this creates challenges for privacy and confidentiality.
- Providers need increased participation in clinical trials.
- Providers need support with managing patient registries.
- Providers want to extract value from metadata.
- Providers want to use precision medicine to meet the healthcare needs of an aging population.
- There is a need for common data definitions.
- Providers want to move from competing to collaborating.
Thank you to the following industry pioneers who contributed their time and expertise to this report:
- CancerLinq / American Society of Clinical Oncology
- Children’s Hospital Philadelphia
- Johns Hopkins Hospital
- Indiana University Health
- Marshfield Clinic
- Mayo Clinic
- University of Texas Health Science Center at Houston
- Vanderbilt University Medical Center
- among others
 The Foundation for eHealth Initiative (eHI) is a neutral, non-profit organization that convenes executives from multi-stakeholder groups to identify best practices to transform care through use of information and innovation. This report provides an environmental analysis of the current precision medicine and genomics market in the United States healthcare industry. According to the National Institutes of Health (NIH), precision medicine is “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.” Precision medicine goes hand in hand with “genomics” research. Genomic information can be utilized to help diagnose and treat a person’s disease. In the last several years, many provider organizations have launched new initiatives in precision medicine and genomics in an effort to improve patient outcomes.