PAC 2018 Year in Review

It’s been a busy year for the Patient Advisory Council (PAC). Twenty-eighteen has seen the PAC evolve to be more dynamic and engaged than ever before. The progress and developments made in our group of 50+ patient members include substantial leadership changes and more toolkits than I can even remember. 

Looking back...

The PAC experienced profound leadership changes in 2018, including the “passing-of-the-torch” from former co-leads Alex and Bianca to Christian and myself (Cat). When I asked Alex what his favorite achievements are, he noted the creation of the PAC Retreat (planned, budgeted and carried out by PAC members), as well as the opportunities he had to help a variety of ImproveCareNow (ICN) centers, to make new friends in the form of other PAC members, and his role in the development of new leaders. Bianca notes the changes she and Alex made to the PAC structure, creating a foundation for members to become more engaged. She also reflects on her deep appreciation for the support of the ICN Community during rough patches in her health. She wrote about these times in this LOOP post about remission and in this one about ostomies and body image.

New Leaders

As for Christian and myself, this year’s incoming PAC leaders, what are we looking most forward to working with the PAC on in the coming year? Christian looks forward to continuing to work directly with ICN Community members and is excited to find ways to use his new co-lead position to foster connections between the PAC and other stakeholder groups across ICN. As for me, I’m excited to work on increasing PAC Productivity (maybe you’ve noticed?) while making sure the PAC leadership team is focused on building personal and supportive relationships with PAC members. Relationships are what holds groups together, and it takes a concerted effort to form them in a group that is connected mainly online. As a community of individuals who need varying levels of support from day to day, making the PAC feel and function like an extended family is incredibly important.

Recruitment

In addition to the PAC co-lead transition, we’ve also welcomed some new Taskforce chairs. Tyler, who stepped down from the Recruitment Taskforce to dedicate himself to law school, looks back fondly on how much the PAC has grown during his time.

“Our active members have tripled, and our growth has allowed us to take on so many new projects and have substantial patient representation within ICN. I am proud of that growth and seeing the PAC become a more accepting, open environment for all patients who wish to be involved in shaping the future of IBD care.” - Tyler

Becky remains on board as Recruitment co-chair and is excited to be joined by Chloe. Becky would like to work more closely with the Parent Working Group (PWG), continue to boost patient & family engagement efforts at local ICN care centers, and also continue to welcome new PAC members. Becky and Chloe will pursue PAC recruitment goals while remaining committed to ensuring PAC members have opportunity to make a tangible difference in IBD Care.

Communications

Natalie, our Communications co-chair, is now joined by Lexa. Natalie notes how much they’ve accomplished in terms of spreading awareness about the PAC, ImproveCareNow and IBD through social media, while also adding a personal storytelling component to  content through regular contributions to LOOP. She notes that, “Our posts and articles have received a ton of insight and even comments of praise. We are proud of our members for showing their raw and true stories to make another patient feel connected or not alone.” Lexa is excited to keep the social media momentum going, making our presence more dynamic and getting more people engaged with ICN and the PAC.

Advocacy

Although our Advocacy Taskforce saw no leadership changes, they are still hard at work developing patient-created resources. They are excited to be releasing a NEW Accommodations Toolkit to the ICN Community on 12/13/18! This resource aims to help IBD patients and their families better understand and navigate the world of workplace and school accommodations with IBD. Additionally, work is underway on a Nutrition Toolkit, which will document patient experiences with different nutritional therapies and IBD. Already in 2018, the Body Image Toolkit and the Travel Toolkit were released! If you have an idea for a toolkit you know patients would benefit from, please feel free to reach out and let us know.

What’s next?

As for the future (aka 2019)...as one of the new PAC co-leads, I’ve never been more excited to see what the PAC does with its time. We look forward to focusing our work on priority topics ranging from those generated right within the PAC, as well as those suggested by the larger ICN Community. We want to continue developing new toolkits that are useful to patients with IBD and their families, and look forward to releasing some we already have in production. Additionally, we’d like to make it easier for centers to engage patients both in Quality Improvement at the local level, as well as in advocacy groups like the PAC. We also hope to build momentum around the idea that some of the best resources for patients are those that are patient-created, and help centers incorporate more PAC materials into their clinical workflow.

As always, please feel free to reach out if you have any feedback or ideas for the PAC. You can reach us by leaving a comment below, or by contacting us at improvecarenow.org/patients. We look forward to a productive and imPACtful 2019 and beyond!

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