Trust and Loss

Events ranging from the deaths of human volunteers (and also this), the fabrication of investigative data and results, suspension of federally funded research at the nation’s leading academic institutions, and continuing concern about the growing influence of the pharmaceutical industry on the medical profession and its research, all serve to erode the public’s trust in and support for the biomedical research enterprise. Thus, pronouncements about the need to foster public trust in the research enterprise are commonplace. However, it is not obvious what institutions and researchers should be doing to prove themselves worthy of the public’s trust.

During our next class session, we will explore steps that could be taken by academic medical centers to demonstrate their trustworthiness. To begin our exploration, we will use the following role play exercise:

The Case of the compromised laptop and the angry Mayor [This is a FICTIONAL case study]

Jessy has been a postdoctoral fellow in Dr. Hunter’s lab for the last 18 months. Unbeknownst to Dr. Hunter, and against university policy, Jessy downloaded an encrypted database containing large segments of progress notes from patients’ medical records. Jessy downloaded the database onto his laptop so that he could finish up some data analysis while attending a conference in Boston.

Jessy’s wife, Jessica, is a critical care nurse at UCH. While Jessy was in Boston, Senator Ted Kennedy was admitted to UCH while he was in town for the Democratic National Convention. As a nurse in the critical care unit he was staying in, she had access to his electronic medical record. In an email to Jessy, she related reading in his medical record that his prognosis was a life expectancy of 6 months or less. Jessy read this email while attending a presentation at the conference and while taking a break from reviewing text in the database. A Boston Herald reporter just happened to be seated next to Jessy and was able to read Jessica’s email. The reporter queried Jessy about the email, to Jessy’s great dismay, and also asked if those were patient medical records that he had been reading during the presentation. Jessy tried to play dumb and got up and moved to another seat several rows away from the reporter.

The next day, Jessy was horrified to read about Senator Kennedy’s prognosis in an article on the front page of the Boston Herald that referenced an “email sent from a nurse at UCH who was at the Senator’s bedside to a conference attendee in Boston.” A UCH spokesperson interviewed for the story had declined to confirm the information contained in the email.  After recovering from his initial shock, Jessy resumed reading the newspaper and came to the editorial page to see the lead editorial, “How private are your medical records, really?” and read about “a conference attendee reading personal medical records in full view of dozens of strangers.”

Jessy’s lapse followed closely on the heels of a patient’s death at UCH who was admitted to a monitoring unit to see whether adjustments to his medication were in order. These two incidents, following so closely to one another, have created major problems for Aurora’s mayor, Ed Tauer. A constant booster of the Anschutz Medical Campus, he reports that his office is being overwhelmed with calls from angry citizens demanding to know “what is going on at AMC and whether any one can be trusted to do anything right there.”

To learn for himself what is in fact going on, and what reassurances, if any, he can provide to the citizens of Aurora, he has scheduled a visit with campus leaders. Those leaders have requested our assistance in providing talking points they can use that will demonstrate the trustworthiness of both the research and medical care activities at AMC.
At class on Tuesday we will break into small groups to do the following:
1. Identify the measures currently in place that demonstrates why the public can trust the research conducted at AMC.
2. Identify what steps will be taken to prevent future misuse of research databases.
3. Develop a list of offices and/or individuals at the University who can be contacted to help complete the tasks in 1 and 2 above.