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IBD Partners: Top Citizen Scientist Award Toolkit A Model forMeaningful Engagement

Table of Contents

Introduction p. 1

Top Citizen Scientist Protocol p. 2

Top Citizen Scientist Sample Email to Nominee p. 4

Top Citizen Scientist Sample Thank You Letter p. 5

Top Citizen Scientist Sample Email to Winners p. 6

Top Citizen Scientist Spotlight Blog/e-Newsletter Template p. 7

Top Citizen Scientist Award Certificate Sample p. 8

Top Citizen Scientist Certificate and Branded Mug (image) p. 9

IBD Partners: Top Citizen Scientist Award Toolkit July 2018

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Introduction IBD (Inflammatory Bowel Disease) Partners (formerly CCFA Partners) is a patient-powered research network and online registry born from a partnership between the Crohn's & Colitis Foundation of America and the University of North Carolina School of Medicine. IBD Partners is designed to improve the quality of life for patients with IBD through research and education. The network’s registry includes more than 15,000 adult IBD patients and a parallel registry includes more than 900 kids and teens. Like many community-based health organizations, IBD Partners looks for ways to meaningfully engage with stakeholders to ensure they remain the driving force of IBD research. In addition to providing their health data, patient partners often dedicate significant time and energy outside of their personal responsibilities to participate in these activities. They are routinely invited to provide feedback, ask questions, and propose areas of research or inquiry, which other participants then help to prioritize by casting votes and adding their own ideas. The goal of the IBD Partners’ Top Citizen Scientists Award Program is to further increase participant engagement and publicly elevate the significant contributions of citizen scientists. By nominating patient partners and formally recognizing their contributions in network blog posts and e-newsletters, IBD Partners hopes others will understand their vital role in moving IBD research forward and be inspired to get more involved. The program is the result of a brainstorming session that included members of IBD Partners’ patient governance committee, physicians from their research team, and representatives from the Crohn’s and Colitis Foundation. All of these stakeholders provided input on the resulting drafts of the program protocol and associated documents (e.g., draft email text and certificate), which were completed and approved by the IBD Partners IRB in late 2017. Top Citizen Scientist nominees must self-report a diagnosis of IBD and have contributed to the network in a significant way, such as serving as a patient collaborator for a study, completing multiple surveys, or proposing popular research ideas. IBD will nominate their first Top Citizen Scientist in July of 2018 and will share the results of the program with the PCORnet community. In this toolkit, you will find resources IBD Partners used to create the Top Citizen Scientist Award Program. We encourage you to use these resources to develop a similar program in your community.


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Top Citizen Scientist Protocol Purpose: To describe the process to select and reward citizen scientists who have made significant contributions to IBD Partners research. Protocol:

1. The IBD Partners Research Team (“Research Team”) will select at least one Top Citizen Scientist on an annual basis.

a. Top Citizen Scientists must self-report a diagnosis of IBD and have contributed to the network in a significant way (e.g., served as a patient collaborator for a study, completed multiple surveys, proposed popular research ideas, number of Citizen Scientist points).

i. Note: It is not a requirement of this award that an individual be an IBD Partners member.

2. The IBD Partners Project Manager (“Project Manager”) will present Top Citizen Scientist selections to the IBD Partners Patient Governance Committee (“Patient Governance Committee”) for final approval.

3. The Project Manager will notify the Top Citizen Scientist of the award nomination via email and request both a mailing address to send a thank you gift and permission to feature the individual in an IBD Partners e-newsletter (see Page 2 below).

4. The Project Manager’s actions at this step are dependent upon the selected individual’s response to the award notification email:

a. No response: Send one follow-up email. i. If no response to the follow-up email after a reasonable amount of time, select

new Top Citizen Scientists until one agrees to be featured in a blog and e-newsletter or until five have been selected or until the list of eligible nominees is exhausted, whichever comes first.

b. Response + not okay to include in e-newsletter: Send a thank you gift, Top Citizen Scientist Certificate (see below), and a thank you letter (see Page 3 below) via FedEx.

i. Select new Top Citizen Scientists until one agrees to be featured in a blog and e-newsletter or until five have been selected or until the list of eligible nominees is exhausted, whichever comes first.

c. Response + okay to include in e-newsletter: Send a thank you gift, Top Citizen Scientist Certificate, and thank you letter via FedEx.

i. Note: The certificate should only include the blue certificate symbol with text “CS 25” if the awardee has 25 Citizen Scientist points. If the awardee has less than 25 CS points, remove the blue symbol from the certificate before printing.

5. If the Top Citizen Scientist consented to be featured in an IBD Partners e-newsletter, the Project Manager will send questions via email (see Page 5 below).

6. The Project Manager will format responses into a blog post and send it to the Research Team and Patient Governance Committee for feedback.

7. The Project Manager will send a draft of the blog post to the Top Citizen Scientist for final approval.


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8. Once approved by the participant, the Project Manager will post the blog on the portal and include it in an e-newsletter.

Budget: • Customized beaker mug w/ IBD Partners logo and text “You’re a Top Citizen Scientist!”:

http://www.whatdoyouneed.com/beaker-lab-glass-mugs-custom-decorated-promotional-logo.htm

• Quantity: 50 • Budget (Crohn’s & Colitis Foundation): ~$2,000.00


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Top Citizen Scientist Sample Email to Nominee Subject Line: IBD Partners: You’re a Top Citizen Scientist! Text: Hi [Insert Name],

Congratulations! You have been selected as a Top Citizen Scientist in IBD Partners. This award recognizes members who contribute to patient-centered research through contributing health data, helping to prioritize research questions, and collaborating with researchers on the design and implementation of important studies. We think you are an exemplary Citizen Scientist. The IBD Partners Research Team was impressed by [Insert personalized text]. Your contributions have made a difference by [insert personalized text]. We would like to send a small gift to you as a thank you. We would also like to feature you in a blog post and an upcoming IBD Partners e-newsletter. Please reply to this email to provide the address to which you would like your small gift sent. Please also let us know if you are willing to be featured in a blog and/or our upcoming e-newsletter, such as this one.

We look forward to hearing from you. Congrats again!

[Insert Name of IBD Partners Project Manager]


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Top Citizen Scientist Sample Thank You Letter

Dear [Insert Name],

Thank you again for your valuable contributions to IBD Partners! It is wonderful to know there are people like you in the world who are so willing to give time and effort to improve the lives of the greater IBD community. Your efforts do not go unnoticed! We hope you will accept this small gift as a token of our appreciation. We look forward to continuing on this journey together to find better treatments for all patients with IBD.

Sincerely,

Michael Kappelman IBD Partners Principal Investigator Jessica Burris IBD Partners Patient Governance Committee Member David Walter IBD Partners Patient Governance Committee Member Jenny Dorand IBD Partners Patient Governance Committee Member

Nick Uzl IBD Partners Co-Investigator & Patient Governance Committee Chair Brian Price IBD Partners Patient Governance Committee Member Sue Johnson IBD Partners Patient Governance Committee Member


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Top Citizen Scientist Sample Email to Winners Subject line: Top Citizen Scientist feature details Text: Hi [Insert Name], Thanks again for agreeing to be featured in a blog post and e-newsletter. These features are a great way to help other patients learn how they can get more involved in IBD research. We plan to use a question/answer format. I attached a list of questions you could answer. Please do not feel like you need to answer them all, just the ones you like best. You could also create your own questions and answer those instead! Once you send your responses back, we will compile them into a blog post (like this one) and send back to you for final approval. Let me know if you have any questions. Thanks again! [Insert Name of IBD Partners Project Manager]


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Top Citizen Scientist Spotlight Blog/e-Newsletter Template

Citizen Scientist Spotlight

Meet [Insert Name]!

[Insert introduction paragraph] Tell us a little about yourself. What is your role in IBD Partners? How long have you had IBD? What drove you to join IBD Partners? Why is your participation in IBD Partners important? What do you hope IBD Partners will achieve in the next few years? How has IBD changed your life? [Add 2-4 personalized questions.]

Do you have an interesting IBD research idea? Visit Research Ideas to post your idea. Researchers review the most popular ideas on a monthly basis. Your idea may even lead to a study!

[Insert Photo}


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Top Citizen Scientist Certificate and Branded Mug

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