Case Study: Understanding the Alzheimer’s Disease (including MCI) Patient Journey with Limited Patient Voice

Background: NetNoggin® conducts netnographic research (also called “ethnography online”) through social media listening. Researchers in the Alzheimer’s disease (including mild cognitive impairment [MCI]) community often assume patients and caregivers are not talking online due to 1) the population’s unwillingness to accept social media as a preferred form of communication (due to older demographics), 2) MCI and early stage patients being unaware of their symptoms, and 3) disease progression impeding patients’ functional ability to communicate. NetNoggin® drafted the following hypothesis and challenged their netnographers (specialized analysts trained in netnography) to research this theory.

Hypothesis: Social media listening may not be an effective method to understand the voice of patients’ with Alzheimer’s disease (including MCI) and their caregivers due to patient and caregiver demographics and other barriers to participating online. Objective: NetNoggin® was challenged to use social media listening as a means to capture the patient voice and create a comprehensive, patient- and caregiver-reported, Alzheimer’s disease (including MCI) patient journey (from symptom onset through end of life) while knowing Alzheimer's disease (including MCI) impedes patients from actively participating online.

Methods: NetNoggin’s netnographers extracted Alzheimer’s disease (including MCI)-related data from their universe of over 400 million social network channels. The netnographers captured over 685,000 conversations from June 2019 through May 2020 using Alzheimer’s disease (including MCI)-related keywords. Using NetNoggin’s proprietary netnographic and qualitative research methods, the netnographers filtered the data and extracted only patient and caregiver conversations. Using only patient and caregiver conversations, the netnographers mapped the Alzheimer’s disease (including MCI) patient journey including various pathway which were taken.

Results: The hypothesis above was disproved: patients and caregivers are in fact using social media to talk online. The data collected in this listening period was sufficient to create a comprehensive patient journey using only the voice of patients and caregivers. Additional results:

  • For every patient post, there were approximately 34 caregiver posts.
  • Few patients recognize and discuss their early symptoms, emotions/fears, and the impact of early symptoms on their life.
  • Patient voice begins to diminish after Stage 5 (on the Global Deterioration Scale); however, caregiver voice is strong and fills in the remaining gaps in the patient journey.
  • While organizations and advocates/advocate groups were the most frequent posters online, caregivers were the next most active group in the community followed by patients and HCPs.
  • Although each patient is unique and may not experience the same symptoms, the netnographers identified over 100 tipping points (noticeable progression or change in symptoms) along the patient journey.
  • The netnographers identified over 40 patient and caregiver reported outcomes due to Alzheimer’s disease (including MCI).

Therefore, social media listening can be an effective method to understand Alzheimer’s disease (including MCI) patient and caregiver voice regardless of patient demographics and barriers to participate online.

Conclusion: Learning about Alzheimer’s disease (including MCI) directly from the patient and caregiver is crucial to designing effective clinical trials and being able to market new therapies appropriately. Since patients and caregivers are active online, researchers have the opportunity to incorporate patient and caregiver perspectives into the pharmaceutical drug development/research process. NetNoggin® believes social media listening is a great foundation to bring patient and caregiver voice into clinical trial design and early commercial strategies as social media listening provides a much larger sample size than other research methods, is typically unbiased and unobtrusive, and ensures patient and caregiver unmet needs are being heard (and hopefully met). 

Download the results of this study in our infographic here:

About NetNoggin®: NetNoggin® applies structure to social media big data by using their technology and expert netnographers who are trained in various disease areas, linguistics, qualitative techniques, storytelling, pharmaceutical marketing, and science to insure the context and interpretation of data is accurate. Using this methodology, NetNoggin® offers syndicated and custom research reports to help bring patient and caregiver voice into the drug development process. For more information on NetNoggin®, visit:

Megan Newcomer, BS, BS, BFA, BA, NetNoggin®,
Christine Rudnick, BS, NetNoggin®,
Diane Noland, NetNoggin®,
Diana Conger, MBA, BS, NetNoggin®,