Adoption of Patient-Generated Health Data in Oncology: A Report From the NCCN EHR Oncology Advisory Group.

BACKGROUND: Collecting, monitoring, and responding to patient-generated health data (PGHD) are associated with improved quality of life and patient satisfaction, and possibly with improved patient survival in oncology. However, the current state of adoption, types of PGHD collected, and degree of integration into electronic health records (EHRs) is unknown. METHODS: The NCCN EHR Oncology Advisory Group formed a Patient-Reported Outcomes (PRO) Workgroup to perform an assessment and provide recommendations for cancer centers, researchers, and EHR vendors to advance the collection and use of PGHD in oncology. The issues were evaluated via a survey of NCCN Member Institutions. Questions were designed to assess the current state of PGHD collection, including how, what, and where PGHD are collected. Additionally, detailed questions about governance and data integration into EHRs were asked. RESULTS: Of 28 Member Institutions surveyed, 23 responded. The collection and use of PGHD is widespread among NCCN Members Institutions (96%). Most centers (90%) embed at least some PGHD into the EHR, although challenges remain, as evidenced by 88% of respondents reporting the use of instruments not integrated. Forty-seven percent of respondents are leveraging PGHD for process automation and adherence to best evidence. Content type and integration touchpoints vary among the members, as well as governance maturity. CONCLUSIONS: The reported variability regarding PGHD suggests that it may not yet have reached its full potential for oncology care delivery. As the adoption of PGHD in oncology continues to expand, opportunities exist to enhance their utility. Among the recommendations for cancer centers is establishment of a governance process that includes patients. Researchers should consider determining which PGHD instruments confer the highest value. It is recommended that EHR vendors collaborate with cancer centers to develop solutions for the collection, interpretation, visualization, and use of PGHD.

The evolving role of health educators in advancing patient safety: forging partnerships and leading change.

At least 1.5 million preventable injuries because of adverse drug events occur in the United States each year, according to an Institute of Medicine report. IOM and other organizations at the forefront of health care improvement emphasize that stronger partnerships between patients, their families, and health care providers are necessary to make health care safer. Health educators possess a skill set and an ethical framework that effectively equip them to advance patient and family-centered care and contribute in other significant ways to a safer health care system. Health educators in clinical settings are playing varied and significant roles in advancing patient safety. They are removing barriers to clear communication and forging partnerships between patients, their families, and staff. Health educators are leading patient safety culture change within their institutions and contributing to the shift from provider-centric to patient-centric systems. To expand their impact in improving patient safety, health educators in clinical settings are participating in public awareness campaigns. In seeking to enhance patient safety, health educators face a number of challenges. To successfully manage those, health educators must expand their knowledge, broaden connections, and engage patients and families in meaningful ways.