Connection, Community, and Care Navigation Through the Eyes of the Leukemia & Lymphoma Society
Laura Cannon, PharmD, MPH, BCOP
Clinical Assistant Professor and Oncology Pharmacist
The University of Texas at Austin College of Pharmacy and Dell Medical School Livestrong Cancer Institutes
Austin, TX
Marin Abousaud, PharmD, BCOP
Oncology Clinical Pharmacy Specialist, Head and Neck Cancer
Emory Healthcare, Winship Cancer Institute
Atlanta, GA
As humans, we are built for connection. We need it to provide support, to foster growth, and to share life’s ups and downs. The needs of a cancer patient are no different. Often, the difficulty lies in finding someone that understands your experience, can relate to your concerns, and can provide validation. It is not always possible to find someone of similar age or diagnosis within your own hospital or even within your own community. The Leukemia & Lymphoma Society (LLS) is just one of many patient advocacy organizations that have identified this need and provided online resources to create necessary connection and support for patients and their loved ones. The LLS mission is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.
LLS Community is an online platform where more than 16,000 patients, caregivers, and healthcare providers currently subscribe as members. This community is a virtual space where members can interact with each other in numerous ways including posting questions, links, and successes on a community news feed or connecting with an Information Specialist such as a nurse navigator or social worker to assist with care navigation. By becoming a member of LLS Community, you have access to numerous educational resources and first-hand experience from patients, caregivers, and healthcare providers across the country at your fingertips.
In addition to the large LLS Community, members have the opportunity to join smaller groups related to their specific diagnosis or demographics such as BIPOC, LGBTQI, Caregivers, Parents, Veterans, or those interested in Fertility and Pregnancy. Allowing members to connect with a community can be more valuable than any educational resource and can be a source of inspiration and hope for those navigating the cancer journey. Tricia Hernandez, who currently serves at the Senior Manager of Community Engagement for LLS, says, “I feel like patients who are involved in the community have a greater opportunity to connect. Almost all patients join and say, ‘I need to meet someone else who is going through what I’m going through’.” LLS Community allows patients to do just that, which can be so valuable, especially during times where patients may feel anxious, alone, or isolated.
LLS has employed many strategies to foster engagement on their online community platform such as posing a ‘Question of the Day’ to promote interaction and discussion. They also focus on sharing timely articles to the news feed that patients may find relevant. For example, sharing articles from a national meeting while it’s occurring or articles related to the effect of the COVID-19 pandemic on cancer patients. Any member is able to comment directly on these posts with additional findings or questions, allowing members to actively participate in becoming more knowledgeable about topics that impact their care. Posts may also serve to encourage discussion amongst patients and healthcare providers at the local level by exposing patients to timely resources.
In addition to LLS Community, the organization also provides virtual education programs including a national blood cancer conference, national webinars and local education sessions. A recent change has allowed content to be available online for virtual blood cancer conferences even after the initial conference took place, which increased the accessibility of educational resources for those who registered.
As pharmacists, we have all experienced the hunger patients and caregivers have for educational information and for someone to relate to their experiences. LLS Community offers direct access to these resources that other patients, caregivers, and healthcare providers have found to be helpful. Another resource that is often lacking is a common space to track information related to a patient’s cancer diagnosis. Through the use of the LLS Health Manager™ mobile application, patients have the ability to track side effects, medications, questions, and food and water intake. The application will generate a report based on your tracking information and even provides the option to share this information with your caregiver and healthcare team. In addition to LLS Community, this application allows patients and caregivers to take an active role in their cancer journey.
We all know navigating a cancer diagnosis can be overwhelming for all parties involved. These examples, through the lens of LLS, provide an overview of some of the many resources available through patient advocacy organizations. The more we can familiarize ourselves with available resources, the more we can continue to work together to provide the best support to our patients and their loved ones. To become a member of LLS Community please visit communityview.LLS.org. The LLS Health Manager™ application is available as a free download through your smart phone application store.
Tricia Hernandez, MS has worked with The Leukemia & Lymphoma Society for the past six years in roles as a Patient & Community Outreach Manager and now Senior Manager of Community Engagement. In these roles, she works directly with patients, caregivers and healthcare professionals to share support and education programming and resources and increase access to care for underserved populations. She manages the online LLS Community, which provides a gathering space to share hope, support and information. Tricia is also an 18-year lymphoma survivor.