The long-term goals of LUNGevity’s information needs assessment studies are to understand how and when patients are currently receiving information, why they are not receiving information, and to develop strategies to overcome barriers to getting important information in their hands.
It is easy to assume that lung cancer patients have access to the latest information—specifically, information that is customized to their type, their stage, and where they are in their treatment. Based on informal surveys of patients, LUNGevity found that patients, in fact, receive very limited information when they are diagnosed with lung cancer and throughout their lung cancer journey.
Without help in finding credible information, patients and their families can be left frightened, overwhelmed, and confused when navigating their lung cancer diagnosis.
Until we understand why patients are not receiving information, we will not be able to get the appropriate materials to them. In addition, patient information needs may vary based on age, geographic location (ease of access to community resources), socioeconomic status, and level of health literacy.
Reaching the Unreached – pilot study
To understand how information on lung cancer is disseminated, LUNGevity conducted a quantitative study to understand what types of information patients and their caregivers receive, in what format, and at what points during their lung cancer journey. LUNGevity also sought to find out preferred formats for receiving information on lung cancer.
Barriers to Clinical Trial Participation Study
In 2017, LUNGevity fielded a study to understand barriers to participation in lung cancer clinical trials, as reported by survivors and their caregivers.