Frequently Asked Questions About the PAC

The Patient Advisory Council (PAC) is a group of young (14 +), passionate and motivated patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease, or IBD). Together, the PAC is a voice for all patients receiving care at ImproveCareNow Centers. PAC members contribute to research studies and the development of health care innovations; they share valuable experience and insights with healthcare professionals, researchers and others; and they raise awareness of IBD and ImproveCareNow. In this post, PAC members have answered questions they are frequently asked, about what the PAC is, how to connect patients with the PAC and how to support the PAC in reaching their goals. (If you’re a member of an ICN center – pay close attention to the last four questions & answers - they're directed at you!)

How do interested patients contact the PAC for more information, or to join?

Interested patients can fill out the PAC contact form at improvecarenow.org/patients, or send a message through our @icnpatients social media platforms (Facebook, Instagram, Snapchat or Twitter), to let us know they’re interested in joining.

Can patients check out the PAC without joining?

Yes! Interested patients are welcome to listen in on PAC monthly calls, follow us on our @icnpatients social media platforms (Facebook, Instagram, Snapchat or Twitter), and reach out to us to ask questions using the PAC contact form at improvecarenow.org/patients

What does the PAC offer for new members?

In addition to a strong peer-to-peer support system, the PAC gives patients an opportunity to grow with their disease by allowing them to take an active role in the improvement of the care they (and others) receive. PAC also provides members with the opportunity to develop a wide variety of useful skills like understanding and participating in research, team work, and experience in a professional setting.

How old do you have to be to join the PAC?

Currently, the PAC is accepting new members who are 14 years and older. Many of our active members are in high school and college.

Are there any resources for patients 10-13 since they can’t join the PAC? How can we get our patients who are less than 14 years old involved in PAC?

Younger patients can follow the PAC on social media (see next question). They can also use any PAC resources like our wide variety of toolkits, videos, and member experiences! 

What PAC social media platforms can I share with interested patients?

The PAC username is @icnpatients on Facebook, Instagram, Snapchat or Twitter

What is expected of a PAC member?

Members are expected to join the majority of PAC monthly calls and participate in the creation of toolkits and other resources. The PAC understands that patients can be very busy with school, jobs, and their disease so the amount of participation is very flexible for each member.

How do you handle privacy of PAC members?

Consent forms, completed and signed by a parent or guardian, are required for all PAC members under 18 years old. Participating PAC members will be asked to complete a media release form, which describes exactly the type of information they will allow to be shared, and how/where it will be shared.

Where can I find PAC Toolkits?

All published toolkits are available in the Toolkits and Guides section of the ImproveCareNow website. If you have trouble finding what you’re looking for, contact us.

What type of projects do PAC members work on?

PAC members are involved in a variety of projects including: producing informational videos, writing blog posts, developing patient-focused toolkits, participating on research teams and special topic task forces (i.e., Transition Task Force), and planning and delivering presentations at professional conferences, such as the ImproveCareNow Community Conference and Virtual Community Conference.

How does the PAC recruit patients?

The PAC mainly recruits new patient members through center-based recommendations and word of mouth. Social media, however, is starting to play a key role in our recruitment (the PAC username is @icnpatients on Facebook, Instagram, Snapchat or Twitter) 

Are medical team members invited to join PAC virtual meetings?

PAC meetings are always open to medical team members; to listen, provide input or present on what your center is doing. Please contact us if you’re interested in joining or presenting on a PAC call.

When and where does the PAC meet?

Our All-PAC, virtual meetings typically occur the second Thursday of every month. Sometimes, PAC members will schedule individual calls more frequently, depending on what they’re working on. We meet in-person at twice-yearly ImproveCareNow Community Conferences; however, these events have limited attendance. 

How can Care Centers and individuals use PAC resources to help and engage patients with IBD?

All PAC resources – such as flyers, business cards, videos, blog posts, toolkits and conference recordings – are available to you and can be given to patients and families when and where you see fit (i.e., new diagnosis handbook) and can easily be used as a conversation starter about the PAC and ImproveCareNow. 

Care centers are also always welcome to join monthly PAC calls to discuss how to best engage patients on local and national levels. Please contact us if you're interested in attending a PAC call or if you'd like to talk to patients about how to best use PAC resources. 

How can Care Centers be supportive of and help the PAC?

In-person conversations about the PAC have proven themselves to be our most valuable recruitment tool. Please talk to your patients about the PAC and ImproveCareNow. Use our flyers and other resources to make this easy! If you’re having trouble finding what you’re looking for, contact us.

How can I bring together a group of patients at my center?

First, start by identifying a few patients who you feel are activated, passionate and have time to volunteer. Then, sit down together and develop some goals for the group; use the ImproveCareNow global Aim and 90-day goals format. If you need help, contact us – we’re here to support you!

What is the current PAC membership goal?

In 2019, the PAC has set a membership goal of at least one active PAC member at 25% of participating ImproveCareNow Care Centers. To find out if your center has an active PAC member, contact us.

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Editor's note: this post was last updated in July 2020.