Patient Data Access News

AMIA Outlines Data Use Guideline for Patient-Centered Care, PGHD

Better data governance will streamline the multiple data sources emerging in patient-centered care. This will lead to more actionable use of community data and PGHD.

data use patient-centered care

Source: Thinkstock

By Sara Heath

- Community healthcare partnerships and the integration of the social determinants of health are on the horizon for patient-centered care, but require revamped data guidelines to become a reality, according to a new report from the American Medical Informatics Association (AMIA).

Research has confirmed that a majority of patient health is defined outside the four walls of the hospital. The social determinants of health – which include factors such as race, sociodemographic status, environment, and educational attainment – impact patient care in a way that genetic makeup does not.

Innovations in healthcare technology have certainly influenced how medical professionals can look at the social determinants of health. The EHR offers a comprehensive glimpse into patient care and streamlines how providers access patient data. mHealth devices have given rise to patient-generated health data (PGHD), which help providers track patient health and wellness outside of the care encounter.

“The addition of rich contextual data about patients – and supplied by patients – including environmental, geographic, socio-behavioral, and genomic data, are adding digital definition to patients’ stories,” AMIA wrote in its report. “Recent advancements in mobile health applications add various kinds of person-generated data to already complex clinical data, and offer new ways to engage in care and research.”

These data sources are giving more clarity to the overall picture of patient wellness. In turn, providers are able to care for the whole spectrum of patient health, rather than narrow episodic care.

But to make this transformation a reality, healthcare professionals need a set of data guidelines that will make data creation, collection, and use more streamlined and actionable, AMIA said.

AMIA convened at its AMIA Policy Invitational 2017, which included participants from informatics, health policy, patient advocacy, and the health IT industry. The group first worked to identify key pitfalls to integrating more patient-centered health data use into the healthcare spectrum:

  • Data Standards
  • Data Governance & Ethics
  • Data Sources Across Home & Community
  • Participatory Methods & Citizen Science
  • Outcome Measures
  • Trust & Transparency
  • Supporting Diverse People

From there, invitational participants developed a five-point framework for integrating detailed patient data into a patient-centered industry evolution:

  • Partnership
  • Individual Control
  • Transparency
  • Data as a Social Good
  • Diversity

“We are at or very close to the tipping point where patients and health care professionals become co-producers in the healthcare data ecosystem,” explained API17 Vice Chair Jeremy Warner, MD, MS, in a statement. “This is the time to lay out clear and crisp policies to ensure that data ownership is clearly delineated, that data production is equitable, and that research can benefit from motivated and technology-enabled participants.”

Each of these elements build off one another, the report stated. For example, patient-provider partnerships will drive better patient engagement and activation in care. From there, individual patients take control of their own health using technology and yield their own health data.

Principles of data use transparency, data as a social good, and diversity in patient data access should underlie each of these guidelines, the report noted.

Additionally, industry professionals must create an environment in which patients are empowered to create their own PGHD. Stakeholders such as the Patient-Centered Outcomes Research Institute (PCORI), CMS, and the National Institutes of Health can be in charge of initiatives that activate patients in their own care at a high level.

Additionally, strict data governance efforts will make this data more usable and efficient.

Better data use and governance is a core part of AMIA’s efforts for a more patient-centric healthcare industry, according to AMIA President and CEO Douglas B. Fridsma, PhD, FACP, FAMI.

“We believe that the patient should always be the guiding star in the development and refinement of health informatics policy,” Fridsma said in a statement. “The recommendations that emerged from this Policy Invitational are just some of many potential actions the federal government could take to enhance the role of the patient.”


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