Imperatives for Advancing Data Sharing to Support Digitally Enabled Care

Health Highlights

Editor’s Note: Traditional brick-and-mortar health care organizations and digital health companies are increasingly partnering to provide novel, digitally enabled care models to patients. Given the potential of digitally enabled care, it is critical that these models do not inadvertently increase the fragmentation of health care services. As the American Medical Association and Manatt Health highlight in a new “Future of Health” report, optimizing technologies and policies that reduce fragmentation are key to enabling the effectiveness of digitally enabled care for patients, physicians, and caregivers. The report, summarized below, is based on a workshop that brought together a diverse group of stakeholders, including clinical, policy, patient advocacy and technology leaders, in a facilitated discussion exploring how brick-and-mortar health care organizations and digital health companies can best work together to advance meaningful data sharing in support of effective digitally enabled care models. Click here to download a free copy of the full report.

Seamless and secure data exchange that prioritizes the surfacing of critical and actionable insights early, often and in an accessible format is vital for digitally enabled care. It allows clinicians to have a window into the care their patients receive outside of their offices; enables patients to receive timely, coordinated and connected care; and reduces duplicative or unnecessary tasks for administrative staff. Barriers to seamless data sharing and interoperability are no longer primarily technical in nature, given significant advances in standards development and health information exchange platforms. Instead, organizations experience cultural and operational roadblocks that stand in the way of meaningful data exchange and purposeful utilization of clinical information.

Based on their workshop with clinical, policy, advocacy and technology leaders, the AMA and Manatt identified four key imperatives for advancing data sharing to support effective digitally enabled care models:

  1. Increase organizational readiness for data-sharing activities, including actively participating in data exchange platforms and simplifying contracting. There has been significant policy progress over the last several years to both protect and enable the exchange of health information, including the Health Insurance Portability and Accountability Act of 1996 (HIPAA), the Federal Trade Commission Health Breach Notification Law and Unfair and Deceptive Trade Practices Act, the 21st Century Cures Act and myriad state laws. Despite the level of protection the laws offer, they are complex to navigate, and legal and regulatory issues can still be roadblocks to executing relationships that involve data sharing. There are opportunities for health care organizations and digital health companies to increase organizational readiness to expedite the assessment and execution of new data exchange relationships. By doing this work in advance of relationship discussions, hard conversations and negotiations may be less complicated.
  2. Prioritize and build goal-oriented relationships between partnering organizations and align early on data exchange. Data-sharing arrangements will be easier to establish when both organizations are aligned on why they are sharing data, the value it creates for each organization and what key concerns each organization has in developing that arrangement. Organizations should jointly explore and answer questions about why organizations should share data, the value data create and the concerns an organization may have. Recent national and state efforts to promote data sharing such as TEFCA and the California Data Exchange Framework provide important infrastructure and policy to support data sharing between partnering organizations.
  3. Ensure the integration of identified data aligns with the needs of clinicians, and prioritize integration into clinician workflow to ensure data are actionable. Clinical data must be shared and presented in a way that is actionable, timely and reliable for clinician end users. Clinicians often become frustrated when they receive too much information or duplicate information—instead of a synthesized, actionable set of clinical data that can be used at the point of care to support care and treatment planning. Data are often provided in a PDF format or through a separate application that falls outside the clinician workflow or “single window” in the electronic health record. Using human‑centered design approaches, engaging physicians in data exchange planning and identifying the most critical pieces of information a clinician needs and exactly when they need the pieces to provide “just in time” information promotes the smart use of data.
  4. Support the patient experience with functionality that addresses patient needs and preferences and integrates patients as part of the care team. In designing digitally enabled care models, it is critical to consider the patient and caregiver user experience and to empower patients and caregivers with access to and understanding of their health care information. Experts advise that as organizations establish new digitally enabled care models through partnerships with external companies, they must be careful not to duplicate and exacerbate the fragmentation that has existed in the traditional brick-and-mortar health care environment. To optimize the patient and caregiver experience in digitally enabled care partnerships, organizations must ensure that patients can:
    • Access health information from both organizations in a single place
    • Access health information in a timely manner
    • Maximize the information available to patients, empowering them to be active members of their care team

Looking Forward

Policies and technologies to support clinical data sharing and interoperability have come a long way. The growth in the number of organizations that can and do participate in information exchange has been a significant step forward, and advances in policy, data standards and data science show great promise for optimizing both utilization and protection of this information. In the coming years, the industry will need to focus its attention on the most meaningful ways to organize, analyze and display clinical information. The imperatives articulated above support building organizational culture and relationships that support meaningful data sharing. By embracing these imperatives and supporting information exchange, health care organizations can contribute to achieving the promise of digitally enabled care, improving clinical outcomes and both patient and clinician experiences.



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