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Shaneel Pathak



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    P3.15 - Treatment in the Real World - Support, Survivorship, Systems Research (Not CME Accredited Session) (ID 981)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/26/2018, 12:00 - 13:30, Exhibit Hall
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      P3.15-23 - Data Mining the Internet and Crowdsourcing in Guiding Patient Decision-Making. (ID 12008)

      12:00 - 13:30  |  Presenting Author(s): Shaneel Pathak

      • Abstract
      • Slides

      Background

      The internet, through social media, blogs and forums, has enabled patients to share experiences and outcomes. Data mining and crowdsourcing is a methodological approach to gather the individual experiences within these platforms and convert them into Real World Evidence (RWE) that can help patients make decisions, especially in the case of new treatments or treatments in trial. This abstract is a case study of how this methodology was used to inform the decision between Whole Brain Radiation (WBR) vs. osimertinb in treating brain metastasis in EGFR+, t790M, NSCLC – at a time when the results to an open label trial were pending.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      The methodology identified trusted sources and similar profiled patients. The steps:

      1. Identify reputable on-line sources by referrals.

      2. Crowdsource peers with same tumour group, staging, gene sequence and treatment path.

      3. Analyze results and patient feedback of treatments

      A search identified 46 lung cancer blogs and 4 cancer forums. Inspire.com was then chosen as the crowdsourcing target as it had over 39,000 lung cancer patients registered.

      4c3880bb027f159e801041b1021e88e8 Result

      The search found 470 posts on osimertinib in clinical trial; 66 discussions on brain lesions and osimertinib were accessible from the search. Conversations with patients of the same genetic profiles, metastasis and treatments were selected. The user profiles detailed clinical histories, which increased the trust factor of the data. Information was obtained from April to June 2016 with data points beginning in 2014.

      When reviewing the 66 self-reported cases, it was found that osimertinib was effective in patients with brain metastases in 36% of patients while 4% had no response. Quality of life and side effects were other fields that were explored. This evidence influenced the patient to choose osimertinib instead of WBR to treat her lung cancer.

      8eea62084ca7e541d918e823422bd82e Conclusion

      The Internet offers opportunities to source evidence and help patients to make informed treatment decisions. There is a risk that misinformation may lead patients in the wrong direction, which will then be a burden on the practitioner and negatively influence treatment outcomes.

      Datamining and crowdsourcing is a methodological system that gathers individual self-reported results from the Internet and converts it into credible RWE. For this patient, it increased the trustworthiness of the information and helped decrease anxiety about the treatment decision. Used appropriately, it has the potential to inform treatment decisions, help predict outcomes, and be a tool for post marketing surveillance that can be used to inform health technology assessment.

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