Center for Translational Bioethics & Health Care Policy
Geisinger’s Center for Translational Bioethics and Health Care Policy has developed an approach to bioethics that is collaborative, integrative, intellectually rigorous, and resolutely practical. Since its launch, the Center has evolved to include a 24/7 clinical ethics advice and consultation service; the coordination and collaborative leadership of a network of hospital ethics committees; a broad range of educational activities with physicians and nurses at all levels of training; several collaborative projects in quality improvement; and an increasingly diverse portfolio of scholarship and research.
Four areas are of special concern and effort:
In genomics, Center investigators play integral roles in Geisinger’s MyCode Community Health Initiative, now one of the world’s largest biobanks and a leading program for research in genomics discovery. Their over-arching aim is to explore the ethical, social, and legal impacts of the drive to integrate genomics in clinical practice. With external as well as internal funding, research that draws heavily on bioethics expertise is underway and is focused on various dimensions of the return of genomic results.
- Center investigators are members of a team conducting a qualitative study (utilizing semi-structured interviews) of participants’ experience in receiving results.
- They are also co-investigators on a qualitative study of parental attitudes toward the return of results about (as well as to) their children.
- In addition, Center investigators are team members for a proposed study of pediatric participants’—and their parents’—experience in receiving results for not-yet-clinically-actionable, adult onset disorders.
- Center investigators are also funded contributors to a consortial project funded by the National Human Genome Research Institute focused on the ethical and operational challenges of communicating genomic results within families.
In addition, Center investigators facilitate the work of the MyCode Ethics Advisory Council, an external, independent advisory body that provides ethical oversight for a broad range of activities conducted under the auspices of the MyCode Community Health Initiative. The Council is comprised of four patient-participants and four “experts” in genomics and ethics.
2. Patient engagement and shared decision-making
Geisinger’s research strategic plan places a high priority on patient engagement in research, innovation, and other methodical approaches to improving the care of patients. The aim is to make patient engaged research the default rather than the exception.
- Center investigators lead and participate in a multidisciplinary working group on patient engagement in research, discovery, and innovation, charged with making measurable progress in realizing the vision of a health system wherein patient-engaged research—as well as patient-engaged care—are the norm.
- The working group is also designing an “enabling infrastructure” for patient engagement in research, exploring and (eventually) validating metrics to measure the effectiveness of patient engagement, and developing strategies for recruiting and retaining patients in a range of research-related roles, from participants to advisors to co-investigators.
- Center investigators are developing a programmatic emphasis on the ethical, empirical study of novel methods for enhancing both the delivery and the comprehension/retention of research-related information to prospective participants.
3. Learning health care system
Long rich in many of the data resources required for such a system, Geisinger was ripe for a focused endeavor to implement an LHCS, with explicit guidance from the model developed by the Institute of Medicine (now the National Academy of Medicine) in 2007. In 2013, that endeavor took off from an initial collaboration involving bioethics, clinical innovation, and research and compliance and concerning questions about oversight for studies at the borderline between quality improvement and research. It now also includes representatives from quality and safety, pediatrics, health services research, Geisinger’s Autism and Developmental Medicine Institute, health information technology, and other units of the organization.
- Development (and peer reviewed publication) of a framework for operationalizing a LHCS
- Survey of system leadership to elicit their perspectives on operationalizing the LHCS model at Geisinger, the results of which have also been published
- Survey of clinicians, investigators, and administrators on their attitudes toward Geisinger as a LHCS.
- Framework for a LHCS (integrated with the existing institutional review board)
- Symposium on enhancing patient- and family-centered care that drew nearly 300 clinicians, investigators and patients, all with the aim of developing the conceptual linkages between and among the initiatives in learning health care systems and patient engagement and in improving the patient’s experience of care.
4. Care for patients with serious, advanced illness
In light of Geisinger’s largely rural population, with its heavy burden of chronic disease, the Center’s emphasis on improving the quality (specifically, the ethical quality) of care for patients with serious, advanced illness is not just important but necessary.
- Center investigators staff a 24/7 Ethics Advice and Consultation Service that is responsive to the full range of needs that clinicians, patients or their families might have, especially in the face of the sort of decisional challenges that often arise in their care and treatment.
- Center investigators have collaborated with staff in Quality and Safety and Population Health on the design, conduct, and evaluation of small pilot projects focused on the use of Pennsylvania Order for Life-Sustaining Treatment forms (POLST) as a strategy for ensuring high quality care and treatment at the end of life—especially care and treatment aligned with the patient’s values and preferences. These pilots have been conducted with out-patient dialysis patients, patients with advanced chronic obstructive pulmonary disease, and patients with advanced, recurrent cancer.
- Center investigators are co-investigators on a large, proposed trial comparing the effectiveness of low- and high-resource advance care planning interventions and testing the hypothesis that physicians play a pivotal role in inducing patients to engage in advance care planning.
- Since 2014, throughout central and northeastern Pennsylvania, Center investigators have offered an outreach/public education program entitled It’s a Family Matter: Living with Advanced Illness, Dying Well, and the Importance of Talking About It with Family. The aim is raise awareness about the importance of family conversations about end of life wishes; the program has been provided in 40 different (mainly faith-based) venues to date and, will be offered in at least additional 20 venues in 2016-2017.