Precision Health Youth Advisory Council

Precision health is being promoted as a new way to help people be and stay healthy. Instead of using one-size-fits-all recommendations or approaches to prevent, diagnose, and treat medical conditions, precision health approaches involve using information (such as genomics, electronic health records, and wearables or sensors) that is specific to an individual to shape their personal health management. You might have heard about a large national effort known as the Precision Medicine Initiative® that was recently launched by the National Institutes of Health. Its All of Us Research Program plans to enroll 1 million people in a long-term study to better understand what precision health should involve. Geisinger has its own precision health project known as MyCode® Community Health Initiative that has over 180,000 enrolled patient-participants. Recently, this precision health study has started to provide genomic risk information to individuals who participate. So far the information returned has only been available to people who are at least 18 years old. We hope that you will help us to learn more about topics that matter to patient-participants who are younger than 18 years old and that your insights will help Geisinger find new ways to approach precision health initiatives in ways that meet the needs and interests of our youth patient-participants.

Frequently Asked Questions

1. What is the Youth Advisory Council?

The Precision Health Youth Advisory Council is a group of 14-17 year olds that advises Geisinger researchers on youth perspectives regarding a wide range of issues relevant to precision health studies being planned or conducted at Geisinger.

2. What does the Youth Advisory Council Do?

Youth Advisory Council members will share ideas and provide meaningful input and ongoing feedback on specific research policies, protocols, and priorities for the various precision health projects at Geisinger.

Members might help Geisinger researchers...

• Find specific strategies to recruit, engage, and retain individuals who are under age 18;
• Improve tools that Geisinger uses to communicate and educate people about MyCode® and other precision health projects;
• Set areas of priority (such as diseases, health outcomes, and topics) for precision health projects; and
• Improve the research experience for youth participants.

Youth Advisory Council members are expected to...

• attend up to twelve meetings (at least two in-person and up to ten online meetings);
• contribute to tasks (such as reviewing a pamphlet or creating a poster);
• respond promptly to communications (such as emails, text messages, and calls) from facilitators;
• keep information confidential (in other words, don’t talk to anyone off the council about any business or discussions on the council);
• report and manage any conflicts of interest (as will be explained during council orientation); and
• comply with the Geisinger Code of Conduct and any applicable laws, regulations, and policies (in summary, be responsible, respectful, and honest).

3. How much time commitment is required to serve on the Youth Advisory Council?

The membership term for the Youth Advisory Council is one year, which starts in June and ends in May of the following calendar year. The Youth Advisory Council has a monthly meeting that is expected to last, on average, two hours each month. There might be activities throughout the year that involve extra time. The research faculty facilitators will try to limit the total time commitment to no more than four hours each month. Over the year, members would volunteer between 24 and 48 hours.

4. How often does the Youth Advisory Council meet?

The Youth Advisory Council meets twice per year in Danville, PA. It also meets online once per month. The council will meet no more than 12 times each year.

5. Does Geisinger have a Youth Advisory Council where I live?

At this time, Geisinger has one Youth Advisory Council located in Danville, PA. Expansion of the program to other areas served by Geisinger Health System will depend upon the success of the current Youth Advisory Council, funding support, and community interest.

6. What does the Youth Advisory Council look like?

The Youth Advisory Council has between five (5) and fifteen (15) members each year. The minimum age for members is 14 years, and the maximum age is 17 years. Diversity of background, experience, and perspectives is valued on the Youth Advisory Council; however, all members of the Youth Advisory Council have a shared interest in science and medicine and are interested in helping Geisinger researchers improve how they communicate and interact with young people. The Youth Advisory Council is led by a team of research faculty facilitators who will organize the monthly meetings and field requests from Geisinger researchers to seek advice from the Youth Advisory Council on precision health projects.

7. What are the benefits from serving on the Youth Advisory Council?

Members serving on the Youth Advisory Council may earn volunteer hours for their efforts, which include attending meetings and performing council activities. Geisinger researchers who interact with the Youth Advisory Council might be willing to provide letters of recommendation for members’ college and work applications. Additionally, members earn a certificate of recognition for their successful completion of a term on the Youth Advisory Council. Members of the Youth Advisory Council are not paid.

8. How can I become a member?

To be eligible, an individual must be a Geisinger patient between 14-17 years of age; live within a reasonable travel distance of Danville, PA; have the ability to participate in online meetings; be responsible and trustworthy; and have an interest in pursuing a career in science or medicine. Enrollment as a participant in the MyCode® Community Health Initiative is preferred but not required. There is an application process, and membership is not automatic or guaranteed. To be considered, you must submit an application.

9. How are members selected?

Interested individuals may submit applications at any time. Applications are received on an ongoing basis; however, applications are reviewed once each year (in April). The first review of applications is to verify that the individual is eligible to serve on the Youth Advisory Council. The second review will assess the applicants’ interests and skills. The application process is competitive, and diverse perspectives are essential to the success of the Youth Advisory Council. Individuals who are selected to serve on the Youth Advisory Council and who want to stay on for an additional term will be considered along with all new applications. The selection process will include an attempt to achieve a balance of new and returning members as well as inclusion of diverse backgrounds, experiences, and characteristics.

10. Are there limits to how many terms I may serve on the Youth Advisory Council?

Age is the only term limitation. When an individual reaches age 18, the individual is no longer eligible for the Youth Advisory Council but becomes eligible for the Precision Health Participant Advisory Board. It is Geisinger’s hope that individuals who serve on the Youth Advisory Council will enjoy the experience and want to serve as members for additional terms. Individuals must submit a new application each year, and selection for additional terms is not promised. This is to ensure new perspectives are continually added to the Council.

11. What kind of training or screening do I need before starting a term?
Applicants who previously served in Geisinger’s Junior Volunteers program typically do not need any additional training or screening before serving on the Youth Advisory Council. The first meeting of a new term will include an orientation to the rules and expectations for members. Facilitators may specify additional training, screening, or other requirements for members.

12. Who can I contact if I have additional questions about the Youth Advisory Council?
If you have questions about the Youth Advisory Council, please contact Dr. Jennifer Wagner by email at jwagner1@geisinger.edu or by phone at 570-214-3774.