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Using social media for patient-driven cancer research

Nature Reviews Cancer volume 23, pages 1–2 (2023)Cite this article

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Social media has revolutionized health-care communication across all areas of medicine, and the field of oncology is no exception. When it comes to cancer research, social media has had a major impact. Here we highlight the role of social media in promoting patient-driven cancer research.

People have always sought information. When it comes to medical conditions, access was historically controlled by medical professionals; clinicians would provide their versions of education on diagnosis, treatment and prognosis, perhaps accompanied by written material, whether from a national or local resource. Patients relied on this as the major source of information and recommendations, and in this way, trusting that their doctor was providing the best options for them. In this world, patients, their caregivers and advocates had very little control over what was available to them, acting more like ‘passengers’ in their own health-care journey. This is not the case today. Thanks to the internet, the world is more rapidly accessing information in a far more democratic way, and for people with cancer, it means access to unlimited resources about their own diagnosis, standards of care and investigational approaches, albeit of varying degrees of credibility. This ‘liberation’ of medical information has changed the way health-care is practiced, as patients have the ability to learn more broadly about their condition, standard and investigational therapies, and ways to live beyond their conditions. That is, they have the capacity not to accept the position as a ‘passenger’ but more as a ‘co-driver’ in their own care.

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Authors and Affiliations

  1. Division of Hematology & Oncology, Mayo Clinic Comprehensive Cancer Center, Jacksonville, FL, USA

    Rami Manochakian

  2. Division of Medical Oncology, Lifespan Cancer Institute, Brown University, Providence, RI, USA

    Don S. Dizon

Authors
  1. Rami Manochakian
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  2. Don S. Dizon
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Corresponding authors

Correspondence to Rami Manochakian or Don S. Dizon.

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The authors declare no competing interests.

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Related links

American Association for Cancer Research Scientist↔Survivor Program: https://www.aacr.org/patients-caregivers/patient-advocacy/scientist-survivor-program/

Cervivor: https://cervivor.org/

Count Me In: https://www.broadinstitute.org/count-me-in

GRASP: https://www.graspcancer.org

Patient-Centered Dosing Initiative: https://www.therightdose.org/

RISE: https://www.youngsurvival.org/be-an-advocate/be-a-ysc-advocate

The ROS1ders: https://www.theros1ders.org/

WECAN: https://wecanadvocate.eu/

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Manochakian, R., Dizon, D.S. Using social media for patient-driven cancer research. Nat Rev Cancer 23, 1–2 (2023). https://doi.org/10.1038/s41568-022-00528-4

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  • DOI: https://doi.org/10.1038/s41568-022-00528-4

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