What can online community posts tell us about statin medication side effects beyond drug trial findings?
In the U.S., doctors widely prescribe statin medications to lower cholesterol and prevent heart disease. But the drugs can cause side effects like memory problems. As a result, as many as half of statin users stop taking the medication within the first year.
Studies show a significant difference between the degree of memory changes reported by statin users and the frequency observed in large-scale clinical trials. This discrepancy may be due in part to the fact that criteria restrictions limit participant eligibility in clinical trials to develop and test new drugs. As a result, clinical trial findings may not always truly reflect underrepresented groups or the actual patient population most likely to use a drug after it receives approval. This can lead to inaccurate findings about a drug’s benefits and side effects.
To bridge this gap between clinical trial findings and actual patient experiences, Inspire researchers reviewed more than 11 million online posts shared by statin users. The posts came from various online Inspire communities—not just those focused on heart health. Research findings appeared in the November 2019 issue of the Journal of Medical Internet Research (JMIR).
Project focus: Gauge the usefulness of nontraditional datasets to identify patient experiences and statin side effects overlooked by drug trials
Researchers analyzed millions of Inspire member posts shared across numerous online health communities. The goal was to identify and better understand how people who take statins talk about drug side effects, specifically effects on memory.
Leveraging this type of analysis of real-world conversations helps pharmaceutical and healthcare clients identify drug benefits and side effects that traditional drug trials might overlook. This information provides an opportunity for drug companies to educate physicians and patients about potential medication side effects. Physicians can also use this information to educate patients and better manage drug side effects.
Inspire solution: Combine natural language processing and linguistic analysis to study community forum posts and identify the impact of statins on memory
After employing user-generated content to identify more than 11 million unique online community posts about statins, Inspire researchers used natural language processing (NLP) to extract every post that mentioned statins, memory, or cognition.
Researchers used online medication discussions about tumor necrosis factor (TNF) inhibitors to establish a control group for statistical comparisons. Researchers selected this drug because some people who take statins also take TNF inhibitors. However, TNF inhibitors don’t cause memory or cognitive issues.
To provide a qualitative context to the statistical findings, researchers used hands-on linguistic analysis to review 246 community posts that mentioned both statin use and memory issues. Researchers developed a data-driven codebook that focused on discussions about type of memory impairment, experience of impairment, and patient word choice or lexicon. This data enabled researchers to draw correlations about statin use, memory loss, and cognitive decline.
Inspire findings: Key themes emerged related to statin usage and memory problems
The NLP analysis identified statistical correlations between statin users and online discussions about memory impairment. These findings weren’t seen in the control group, suggesting that statins in particular had a stronger impact on memory than the control treatment (TNF inhibitors).
Describing the impact of statins on memory
Combined, the NLP and linguistic analysis identified four key themes related to the use of statins:
Memory loss
Online community members cited issues with short-term memory loss, forgetfulness, and difficulty remembering things.
Aphasia
Members described struggling to find the words to express their thoughts, as well as an inability to recall the names of people they knew well.
Cognitive impairment
Members described feelings of confusion, brain fog, and an inability to think, reason, or understand.
Emotional change
Memory problems often led to feelings of depression, moodiness, irritability, and anxiety.
Other patient concerns about statins
Researchers also identified patient concerns about:
- Difficulties discussing memory or cognitive issues with providers, who often dismiss claims or assure them the drug benefits outweigh the side effects and risks
- Factors like aging, surgery, and other medications and conditions making memory loss worse
- Risks of taking higher doses of statins that may cause more severe memory loss
- Severity and speed of the onset of “catastrophic” or “instant” memory problems often compared to the sudden onset of dementia or Alzheimer’s disease
- The permanence of the memory problems, and whether stopping the medications would improve memory or make the side effects go away
Study limitations
Researchers noted that the process of linking posts may introduce additional sources of bias. For instance, people with negative experiences may post more frequently than those with positive experiences.
There is also a need for further research to better characterize linked posts, including those from other social media channels. This information may help researchers better understand the strengths and limitations of this approach and how to optimally use it. Researchers also noted the importance of continuing to employ safeguards to protect the privacy of social media users.