Translational Genetics Public Policy

Purpose

The overall purpose of this project is to translate research relevant to genetic services into practice for those audiences and stakeholders who can benefit most from a focused and objective communications program. Such a program will promote appropriate and cost effective access to a broad range of genetic services to patients, families and consumers who will benefit from them.

We believe that translation of the information to be derived from the project is most likely to be effective if we directly engage the stakeholders who will be the beneficiaries of the work in a process of information exchange that would allow them to improve the model through which genetic services are delivered (the overall approach). Hence, throughout the project, we will seek input from stakeholders about what information is most relevant to them and how it should be delivered to make it most accessible.

Challenges

The impetus for this project is rapid projected growth in the clinical availability of genetic technologies. As this growth continues, all the major stakeholder groups involved in the delivery of these and related services will be affected. The overarching dissemination or translational challenge is to conceptualize the differing types of information best suited to the decision-makers in each stakeholder group. We have chosen to organize our objectives for translating this information into three broad categories

• Integration of new knowledge into the education (including professional development and continuing education) of all types of health professionals from whom consumers get much of their genetic information about genetic services
• Integration of new knowledge into the decision-making processes of organizations that shape the system within which genetic services are financed and delivered, including payers, professional associations, and public policy makers
• Integration of new knowledge into the larger public dialog about the ethical, social, and legal issues inherent in the nature of these technologies, which raises questions about the proper scope of their application as well as issues of equity and access

Goals and Objectives

Our three specific goals for the Translational Genetics Public Policy project are to

• Develop an agenda to translate genetic research and information into practice
• Discuss and develop consensus about the most effective methods to translate genetic services information and research
• Disseminate genetic services information and research findings to a wide range of decision makers involved in the financing, delivery, and consumption of genetic services

Methodology

We use 5 principal methodologies.

• Extensive interaction with delivery system and key audience stakeholder advisors and consultants
• Literature review
• Structured interactions with private and public sector developers of genetic services, facilitated through collaboration with membership associations, and representative managers from member companies, in particular, from the Biotechnology Industry Organization (Bio.org) to ascertain genetic service pipeline levels and types of products and services
• Structured interactions with principals at other University and/or free-standing health policy organizations, such as the center for Genome, Ethics, Law and Policy at Duke University, and the Genetics and Public Policy Center at Johns Hopkins
• Translational briefings, utilizing proven communication techniques, both through trade association partners, and independently, drawing on project team experience in providing strategic briefings

Evaluation

Specific measures related to the work plan will include the satisfaction of stakeholder groups with informational materials developed and their dissemination. Also, the number of stakeholder groups who choose to support ongoing development of updated informational materials even after the conclusion of this project will be measured.

Partnerships

The Washington State Department of Health partners with the University of Washington's Resource Center for Health Policy and Institute for Public Health Genetics to conduct this project. Project staff are nationally known for their expertise in multiple areas including delivering genetic services, conducting cost effectiveness analyses, legal and policy analyses, socio-cultural analyses, developing policy options, facilitating dialogs, working with advisory committees, and communicating information in understandable formats.