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Have your voice be heard: Become a patient partner

Note: This post is written by the team of The ONE Group (Oncology – Nutrition – Exercise) at Penn State College of Medicine as part of a first-person blog about their work. Learn more about the group here.

Welcome back to the ONE Blog and all things research with the Community Health Equity & Engagement in Research (CHEER) team! In previous posts, we talked about why participating in research matters and how research can work for everyone. In this edition, we are going to share another way to contribute to research – by becoming a patient partner!

Without getting to know a community and listening to its members, researchers may miss important information. For example, if a researcher is conducting a study to see if providing vouchers to cover the costs of fruits and vegetables at farmers markets increases healthy eating to improve diabetes, it is important to learn about the community first. Without knowing the community and working with its members, researchers may miss important information. In this situation, if the local community members with diabetes don’t have a lot of experience preparing the fruits and vegetables available to them or an easy way to get to the farmers markets due to a lack of transportation, then the day-to-day experiences of the community will not line up with the study, and the results won’t be helpful. A failure to consider the unique needs and challenges faced by the community under study can interfere with research findings and limit their potential benefits for people.

So how can we make sure that research studies match the needs of patients and other members of the community that we are trying to help? You guessed it! By researchers seeking input from community members, like yourself, who have a true understanding of real barriers within your communities and more specifically, a lived experience of a particular condition. This approach is known as community-engaged research (CEnR). In this way, researchers partner with the community to develop and conduct the research through shared decision-making throughout the research process.

You may be wondering, what’s in it for me? Becoming a patient partner on a research study allows you to share your lived experience and intimate knowledge of a particular condition. You can advocate for how a study should be designed, shared with potential participants, and how results can be given back to those communities. This gives the research team important insight to make the research work for all!

Ready to make a difference? Check out CHEER’s Community Partner Toolkit to learn more about how to get involved as a research partner!

You can also check out the ONE group’s ongoing studies or the Volunteer Repository on Studyfinder, a one-stop shop to learn about research opportunities at Penn State. Signing up is easy. The only required information is your name, email address and date of birth. There are options to provide additional information if you are interested. Consider contributing to a healthier future today.

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