Better ways to treat, prevent, diagnose, and understand human sicknesses are not possible without the help of willing volunteers. To ensure community involvement throughout the research process, Penn State Clinical and Translational Science Institute’s community engagement research team is committed to joining forces with patients, community members, groups and organizations to identify and understand health needs.
Few people participate in trials, and those who do don’t always represent the U.S. population. Consider this:
- African Americans represent 12 percent of the U.S. population but only 5 percent of clinical trial participants.
- Hispanics make up 16 percent of the population but only 1 percent of clinical trial participants.
- Women account for 51 percent of the population, yet men make up more than two-thirds of the participants in clinical tests of cardiovascular (heart and blood vessel) devices.
Without your voices and participation, things won’t change. Listed here are multiple opportunities to volunteer and to make a valuable contribution to better health for all.
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Ways to Get Involved with Research
Your voice is a powerful tool when it comes to medical research. It adds valuable insights to the discovery of new treatments that can lead to feeling better and living longer. Sharing first-hand accounts of health challenges you or someone you know faced has a positive influence on the research process.
Your voice also supports our community. People in your neighborhood may struggle with similar challenges but have no one to speak up for them. Breakthroughs in medical research happen when people stand up, speak up and talk about their experiences.
Not all research is the same. It can take on many forms like one-on-one talks, surveys or group discussions. It could also involve testing a new process, treatment or drug.
There are many ways to lend your voice and take action. Opportunities include serving on advisory boards or research teams, or being an ambassador for making community connections. Working together, we can make positive health and wellness changes that benefit everyone.
Raise your voice and become a Citizen Scientist today. To learn more, email email@example.com.
Participating in clinical research studies is one of the most powerful things you can do to be a part of tomorrow’s healthcare breakthroughs.
Penn State Health Milton S. Hershey Medical Center and Penn State are always looking for people who are willing to participate in studies, so that our research can better understand hot to diagnose, treat and prevent diseases and conditions.
Even those without specific medical conditions are needed for research studies. These are called “healthy volunteers.”
Use StudyFinder to quickly and easily identify studies across Penn State that need volunteers. Every study is different, some are looking for people with a specific condition, while others need health volunteers. We’ve created filters to help you find the study that’s right for you. You can also filter by age, and search by keyword to find studies focused on specific conditions and diseases. By getting involved in research, you can help transform the lives of millions.
Other Ways to Find Studies
Penn State Cancer Institute has a long history of excellence in conducting clinical research and clinical trials. Through clinical trials, we have helped to advance the treatment of a number of cancers. The website provides general information on clinical trials, and it provides links to active clinical trials at Penn State Cancer Institute.
Research Match has a simple goal: to bring together two groups of people who are looking for one another. People who are trying to find research studies and researchers who are looking for people to participate in their studies. It is a free and secure registry that has been developed by major academic institutions across the country who want to involve you in the mission of helping today’s studies make a real difference for everyone’s health in the future.
The Community Engagement Studio (CES) is a one-time meeting, approximately an hour and a half long, where community members, like you, give feedback and advice to help researchers improve upon their research projects. Participants receive compensation for their time. Participants are not being recruited for studies but sharing expertise based on their experiences.
Community stakeholders (patients, caregivers, community members and organizations) serve as community experts on a panel. The experts provide feedback on various aspects of a proposed or on-going research project. This includes the study design, program, communication materials, participant recruitment strategies, sharing learning with the community, and applying research findings to practice. The CES helps assure that research meets the needs of people who live in a particular community, or are impacted by a specific health issue.
Community Experts can play an important role in directly guiding a research project that will impact patients and the community. Here are a few ways community experts can make a difference.
- Provides the research team with a deeper understanding of patients’ and communities’ unique circumstances.
- Increases a researcher’s understanding of and sensitivity to the patients and communities they are interested in studying.
- Strengthens academic-community partnerships so that over time, universities become more and more effective in working with patients and communities.
- Helps assess the relevance, feasibility and appropriateness of the research activities.
- Enhances the success of a research project by providing immediate feedback to the researchers.
Questions about Being a Community Expert
What makes me an expert?
Your expertise is your knowledge of a particular community and/or your experience with a health issue either personally or as a caregiver. The researcher that has requested your advice values your opinions and your experiences and would like to incorporate your feedback into their project in the hopes that it can be more successful.
I don’t know anything about research. Why do you think I can help?
No prior knowledge of research is required to serve on a Community Engagement Studio expert panel. The emphasis is on your lived experience. Participating in the Community Engagement Studio will allow you to learn more about research and how it ultimately could affect you or your community.
Will I be paid for my time? I can’t miss work.
Yes, we always compensate our experts and provide a meal. You will be compensated for each CE Studio session and the community engagement coordinator will work to schedule the Community Engagement Studio at a time and location that is convenient for the majority of experts participating.
How do I prepare for a Community Engagement Studio?
From a brief description of the research project or topic that you would be given, you might want to write down any thoughts, concerns or questions in advance of the meeting. This way, these matters can be easily and promptly addressed during the Community Engagement Studio.
There is no need for additional preparation. We are matching you to a specific Community Engagement Studio because of your particular experience, background or knowledge. Remember, you are already an expert!
What can I expect at a CES?
The Community Engagement Studio will take place in a community setting, during hours that are convenient to the community experts. It will last no more than two hours. It is a small group meeting made up of eight to 12 community experts, a few members of the research team, the lead researcher and staff.
The Community Engagement Studio will be facilitated by the community engagement coordinator who is knowledgeable about the research process. In the opening remarks, the coordinator will make introductions and explain the ground rules for the Community Engagement Studio.
Following the opening remarks, the researcher will give a brief overview of his or her project and pose specific questions for you to consider. Examples of questions include: What might stop you or people you know from participating in this study? What measurements and study outcomes are important to you? What would be some effective ways to share what we learn from this study in your community?
The coordinator will guide the discussion as needed to ensure that it stays on track, that all the experts have an opportunity to share their thoughts and it addresses the researcher’s questions.
At the close of the Community Engagement Studio, you will be asked to complete a brief comment and evaluation form that will allow you to give additional feedback that might be helpful to the researcher.
How often do I have to participate? What happens after the meeting?
If you indicate that you would like to continue as an expert, we will contact you anytime a Community Engagement Studio is required that is a good match for your expertise. You can decline a Community Engagement Studio opportunity or ask to be removed from the list at any time. After each Community Engagement Studio, you will be contacted with an update on the research project that you advised on.
Why Participate in a Community Engagement Studio?
By participating in a Community Engagement Studio, you can be a voice for those in your community who may not otherwise be heard.
- Share your voice and experience on health issues that are important to you.
- Meet researchers who are conducting studies on conditions that matter to you.
- Provide your opinion and provide valuable input as a member of the community.
- Raise your voice to improve and benefit future generations.
Become a CES Community Expert
As a registered community expert, we will keep your information on file and contact you if your area of expertise matches a researcher’s Community Engagement Studio request. With questions, or to be added to or removed from the list, email firstname.lastname@example.org.
Do you have a vision for a healthier community? Is there a particular health need that you would like to address? Funding is available to support community health programs and initiatives.
Health education builds knowledge, dispels fears, and creates a positive outlook about the health conditions you or a loved one face. Learning more about a health topic empowers you to make better choices when it comes to your health. Gain valuable resources to get healthy and live longer.
Researchers are looking for volunteers to share a personal story about their experience as an individual facing a health problem or accessing the health system. MyPath StoryBooth allows patients and caregivers to record a conversation to share with researchers so they can better understand peoples’ experiences with health and illness.
Your story could encourage others who must ravel a similar health journey. Participation involves a one-on-one discussion with a friend, family member, caretaker or research staff member. The discussion will last up to 20 minutes and will be audio-recorded. It can be completed in person or over the phone. Participants will also be asked to complete a brief survey. With permission, your story can be shared on a website to encourage and inspire others who may travel a similar health path.
A Science Cafe is a public event that takes place in a casual setting such as a library, pub or coffee house and features an engaging conversation with scientists about a particular topic.
The purpose of the Science Cafe is to increase research literacy and dispel some of the misconceptions and stereotypes about scientists and their work. This is a chance to learn about research on health topics and issues, as well as, how these topics relate to your health.
Each cafe will include a brief, plain language presentation about a research type, science or technology. The cafe setting allows participants to discuss their ideas in a relaxed atmosphere. This encouraged discussion among those who enjoy a small-medium group setting.
Science Cafes occur all over the globe, with more than 200 worldwide in more than 40 countries and at least 50 in the United States.
A town hall meeting is an interactive way for community members to come together, learn about and discuss emerging or critical health topics, new treatments or related legislation of common concern. A panel of experts presents aspects of a health topic, followed by questions and answers from the audience. Some town halls may include virtual participation.
Experts provide information to the public and listen to the varying community perspectives to gain public understanding, identify specific needs, and pinpoint possible solutions. Community members are a respected part of the healthcare process. Participants are invited to discuss health topics and related research with the panelists, encouraging a mutual understanding of health research and its impact.
If your business, organization or place of worship has a small or large group meeting space for a public gathering, please consider sharing your space for a future meeting. Help give voice to health matters that concern our community.