What Price Hope?

  • by: |
  • 01/31/2008
Important story in today’s Wall Street Journal on the topic of patients who suffer adverse events during clinical trials and the broader issue of informed consent. The article focuses largely on the story of Suzanne Davenport, a 71-year-old retired kindergarten teacher, diagnosed with Parkinson's in 1989.

Here’s a link:


One of the major issues discussed is standardization of consent forms. According to the Journal:

“Consent forms and compensation plans vary by institution. There have been sporadic calls to standardize these programs, but none have been widely adopted. The Institute of Medicine, a nonprofit group that advises the government on health policy, recommended in 2002 the creation of a "no fault" compensation system for injured subjects. The goal was to help trial participants resolve their claims quickly, without having to resort to lawsuits.”

But a far more difficult question (not discussed in the WSJ article) is that of patient therapeutic misperception. Can a patient really make an informed decision about what risks he or she is willing to take in the face of serious disease?

To investigate what patients really understand about the trials in which they have enrolled, leading Parkinson’s Disease researchers, ethicists Kim and Kieburtz, have been awarded a 2007 Michael J. Foundation grant to study ongoing participants of PD clinical trials that involve sham surgery controls. They plan to assess, by structured interviews, the potential for the therapeutic misconception i.e., why and how PD patients make their decisions regarding participation in sham surgery controlled studies

Regardless of the outcome, the biggest question remains the concept of what desperate patients want to understand and what they will do for a glimmer of hope.

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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