Patient Advocacy Initiatives of the Cholangiocarcinoma Foundation

August 2020, Vol 1, No 1

During the 2020 Cholangiocarcinoma Foundation (CCF) Annual Conference, Melinda Bachini, Director of Advocacy for the foundation, presented an update on the foundation’s advocacy activities and initiatives toward promotion of the cholangiocarcinoma (CCA) community.

The aim of the CCF’s advocacy group is to enhance in-depth knowledge regarding CCA, provide educational and emotional support for the CCA community of patients and caregivers, and influence clinical research and healthcare delivery in pursuit of improving outcomes for patients with CCA, while channeling the strong emotional culture of patients and caregivers into working toward meeting CCF’s community objectives.

A Team of Volunteers

Ms Bachini has a team of dedicated advocate volunteers who often have daily interactions with patients and caregivers via the phone and e-mail. Her team of volunteers provides referral support for patients with CCA and offers caregivers guidance and support for their own needs. Ms Bachini’s team is also available to help patients find clinical trials as well as CCA experts and treatment facilities specializing in CCA care.

In addition, the advocacy group has a research advocacy committee team composed of 30 members. The members use social media platforms and other electronic media to interact with patients to provide them with timely information on new research findings.

Team representatives participate on patient advisory boards for academic and industry institutions and have a strong presence at oncology conferences. The committee members are kept up to date on the latest research findings related to CCA via monthly webinars and teleconferences.

Ms Bachini introduced a new initiative that her team has been working on in the United States. Her group has held 5 half-day regional CCA symposia at academic institutions in 2020. More than 300 attendees participated in these regional symposia. Patients, caregivers, physicians, and researchers used the opportunity to meet and network with one another. A CCA expert is brought in to present the latest clinical data and discoveries from research.

Other new actions that Ms Bachini is driving include monthly patient and caregiver support group meetings, and twice-monthly educational webinars on various CCA-related topics. The surveys that patients and caregivers are submitting back to CCF will provide the material for topics to address in upcoming webinars.

A New Patient Registry

In the future, Ms Bachini would like to provide robust patient services by expanding the research advocacy efforts to align with CCF’s strategic plan. In addition, other plans that are in the works include:

  • Launching a new patient registry, which will help with patient data collection, recruit patients for clinical trials, or monitor outcomes and best practices; using the existing partnership with Ciitizen, a health technology platform, to provide opportunities for research, finding clinical trials for patients, and helping patients collect their medical records at no cost to them
  • Continuing to invest in patient educational resources, including a nutritional and diet resource by the end of the year; preparing a more centralized, patient-friendly information and support network
  • Continuing to offer opportunities for patients to participate in CCF’s annual conference and regional symposia.

The sites International Cholangiocarcinoma Patient Registry and Gather Your Health Data with Ciitizen are now available on CCF’s homepage on its website.

Ms Bachini encouraged patients to do their part to assist, accelerate, and support research into CCA, by taking a few minutes to join the patient registry through the category “Join the Patient Registry” under the “Patients” tab on their site.

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