Different Options for Different People: Dr Bellinda King-Kallimanis Explores the State of Patient Education in Lung Cancer

A notable feature of its 50th anniversary at the 2024 World Conference on Lung Cancer (WCLC) was a session highlighting patient-advocate perspectives from around the globe. Speakers from Argentina, Nigeria, Ireland, and the US discussed the valuable part patient advocates can play when it comes to addressing barriers in health care access for patients with lung cancer. Among this expert panel, Bellinda King-Kallimanis, PhD, director of patient-focused research, LUNGevity Foundation, centered her presentation around resources for patient education.

For the better part of 2 decades, King-Kallimanis has conducted patient-focused research, with a dedication to trial designs that emphasize patients’ and caregivers’ voices and treatment experiences. In this work, King-Kallimanis has aimed to put patient considerations at the forefront of decision-making processes from drug developers, policy makers, health care professionals, and more. In this interview, she explored the state of patient education, barriers, valuable resources, measuring meaningful impact, and the supportive role of patient advocates.

This transcript has been lightly edited for clarity.

The American Journal of Managed Care^® (AJMC^®): What are the most effective educational resources currently available for patients with lung cancer and how do they address the diverse needs of patients?

Bellinda King-Kallimanis, PhD | image credit: https://www.eurekalert.org/multimedia/944991

King-Kallimanis: We are starting to see people meeting patients where they are. I think a lot of traditional educational materials have been designed using traditional education models as that is what health care providers are comfortable with. However, we can do better than this and really using storytelling and a narrative approach to create much more engaging educational materials. Stories help us connect on an emotional level, which can make the material more memorable. Also, by using storytelling and narratives it’s an opportunity to work with people from different communities so that future patient and their support networks can hear from people who look like them.

AJMC: From your perspective, what are the most significant barriers to health care access for lung cancer patients today? How can patient education specifically help to mitigate these barriers, and what role can healthcare providers play in this effort?

King-Kallimanis: I worry about misinformation a lot. One [survey] found that 1 in 5 Americans go to TikTok for health information before they consult a doctor. While I am unaware of any research yet conducted looking at the quality and reliability of lung cancer education materials on the platform, there is a study by Morton and colleagues from last year that reviewed top TikToks for gynecological cancers and the reliability of the content was generally low. But I do think we have to meet patients and their support networks where they are; and they are on social media.

AJMC: How do patient advocates contribute to improving access to care and supporting lung cancer patients throughout their treatment journey? Can you share examples of successful advocacy initiatives that have made a notable impact on patient outcomes or access?

King-Kallimanis: There are so many different ways patient advocates contribute. It can be at a very individual level where it’s peer-to-peer mentoring. We have a program at LUNGevity Foundation where people are matched to a volunteer who has had a similar diagnosis and each year we host a patient and caregiver summit where these relationships develop more organically and it never ceases to amaze me the speed at which deep connections are made at these meetings. From there, patients and caregivers may be comfortable sharing their stories to raise awareness and create connections. Many people I talk to have shared that some of their treatment experiences have left them feeling very alone. Therefore, reading a story about someone’s experience or finding some survey results that might have data on how many people experienced side effects and even if the numbers are small, people find comfort even in that data point that lets them know they are not alone.

We also have research advocates. We actually just ran a small pilot [study] at LUNGevity where we had 3 people diagnosed with lung cancer join our small research team for 6 months as our Citizen Scientists and they are now out there talking to regulators, for example, about patient-reported tolerability and dose optimization. It is through these different opportunities that we can improve outcomes and access but there is still work to be done.

AJMC: With the rise of digital health tools and telemedicine, how can technology be leveraged to enhance patient education and access to care in lung cancer? Are there any promising digital platforms or apps that you recommend for patient engagement and education?

I believe we need to have different options for different people, there won’t be a one-size-fits-all approach that will work. For example, at LUNGevity we have available specific patient gateways for different groups of patients. For example, we have a gateway for those diagnosed with EGFR-positive non–small cell lung cancer, KRAS, small cell lung cancer, and several others. These are designed to provide patients with tailored materials to their specific diagnosis. There are also groups that have created paper solutions, we worked with Manta Cares to tailor their paper planner to people diagnosed with non–small cell lung cancer because not everyone is online.

AJMC: How can we measure the impact and effectiveness of patient education resources and advocacy efforts in lung cancer care?

This both a great question and a difficult question. Impact is challenging to measure effectively to really understand how a resource has changed or improved an outcome. For example, if a patient feels satisfied with an education material they receive, is that sufficient? Perhaps this also goes back to feeling less alone and if that information is accessible that can also be enough for some. But we really need to work more with patients and their support networks to develop metrics to really answer this question meaningfully.