Reaching the Unreached

The objectives of this pilot study, concluded in December 2016, were fourfold:

  1. To gain understanding of how patients and caregivers who are reached—those who are engaged with the lung cancer community and have relatively easy access to information—get their information about lung cancer and how they would prefer to get it
  2. To determine what barriers to getting the information they perceive as well as what information they do not feel they are getting
  3. To understand the physician perspective on barriers to relaying information and solutions to these barriers
  4. To use the findings of this study to help design a full-scale study among those patients and caregivers who are not as reached as the respondents of this study

The results are summarized below.

Objective 1

  • Patients and caregivers have similar habits and attitudes about seeking information about lung cancer
  • Patients and caregivers get information from multiple sources, including from multiple members of the medical team
  • The oncologist and lung cancer organizations are by far the preferred sources
  • When given a choice, poking around on the internet and using social media go down in importance and print materials go up, although print materials are still less important

 Objective 2

  • Lack of community resources was a major barrier for patients and caregivers
  • Because information is received throughout the treatment journey, information given to patients and caregivers should be customized to each point in the treatment journey
  • Patients and caregivers like information that is tailored to their own situations

Objective 3

  • Physicians cited a number of barriers; lack of time to speak with patients and poor understanding by the patients (this was separate from English not being the patient’s first language) were the barriers mentioned most often
  • While inadequate educational materials were cited by only 11% of the physicians, most of their suggestions about removing barriers focused on improving the content of and channels for relaying information (suggesting that doctors do not have the answers to the two most cited barriers either)
  • About one-fifth of the physicians in our sample, most of whom worked in major urban centers, cited patients not being English speakers as a problem. There is a clear need for translators as well as materials being available in other languages, Spanish and Chinese in particular

Objective 4

  • Include specific unreached groups of lung cancer patients and caregivers (linguistically isolated, geographically isolated, financially isolated, etc)
  • Online and paper surveys are unlikely to yield the necessary information—personal interviews and/or focus groups might be better
  • Dig deeper into perceived barriers and potential solutions
  • Determine what educational materials work best and why
  • Ask patients and caregivers about whether they want graduated information to be given as the treatment journey progresses

The full report is available here.