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Rheumatology & the Shifting Patient Landscape

Marissa Blum, MD, MSHPR, Rachel Dayno, MD, & Anna Wexler, PhD  |  Issue: March 2023  |  March 9, 2023

In Sum

The landscape of patient access to knowledge, other patients and understanding of rheumatic disease is rapidly changing and will continue to do so while more individuals access ready sources of information. However, much of that information may not guide patients to the correct diagnoses or management strategies. Rheumatologists and rheumatology professionals need to continue to help our patients sort through available information and misinformation to provide expertise on what is certain and what is not yet known, and serve as trusted sources to inform healthcare decision making.


Marissa Blum, MD, MSHPR, is an associate professor of clinical medicine, Division of Rheumatology, University of Pennsylvania, Philadelphia, where she is also currently obtaining her master’s degree in bioethics.

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Rachel Dayno, MD, is a rheumatology fellow at the University of Pennsylvania.

Anna Wexler, PhD, is an assistant professor of medical ethics and health policy at the University of Pennsylvania, and is the principal investigator of the Wexler Lab, where she studies the ethical, legal and social issues surrounding emerging technology.

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References

  1. Vuolanto P, Bergroth H, Nurmi J, Salmenniemi S. Reconfiguring health knowledges? Contemporary modes of selfcare as ‘everyday fringe medicine’. Public Underst Sci. 2020 Jul;29(5):508–523.
  2. Steinhubl SR, Topol EJ. Digital Medicine, on its way to being just plain medicine. NPJ Digit Med. 2018 Jan 15:1:20175.
  3. Waldrop T, Alsup D, McLaughlin E. Fearing coronavirus, Arizona man dies after taking a form of chloroquine used to treat aquariums. CNN Health. 2020 Mar 23. https://www.cnn.com/2020/03/23/health/arizona-coronavirus-chloroquine-death/index.html.
  4. Erikainen S, Pickersgill M, Cunningham-Burley S, Chan S. Patienthood and participation in the digital era. Digit Health. 2019 Apr 23;5:1–10.
  5. Lupton D. The quantified self: A sociology of selftracking. Malden, Cambridge: Polity Press. 2016.
  6. Nafus D, Sherman J. Big Data, Big Questions: This one does not go up to 11: The quantified self movement as an alternative big data practice. Int J Commun. 2014 Jun:8:1784–1794.
  7. Aquino F, Donzelli G, DeFranco E, et al. The web and public confidence in MMR vaccination in Italy. Vaccine. 2017 Aug 16;35(35 Pt B):4494–4498.
  8. Kilbride M, Joffe S. The new age of patient autonomy: Implications for the patient-physician relationship. JAMA. 2018 Nov 20;320(19):1973–1974.
  9. Prainsack B. The powers of participatory medicine. PLoS Biol. 2014 Apr 15;12(4):e1001837.
  10. Simpkin A, Armstrong K. Communicating uncertainty: A narrative review and framework for future research. J Gen Intern Med. 2019 Nov;34(11):2586–2591.
  11. Committee on Diagnostic Error in Healthcare. Balogh E, Miller B, Ball J, eds. Improving diagnosis in health care. Washington, D.C.: National Academies Press. 2015. https://www.ncbi.nlm.nih.gov/books/NBK338596/

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