Talk:Patient participation

Perhaps specialized cases?

Several medical ethicists I know use the term "research burden" with respect to patients finding clinical trials, and, when in a research facility, what may seem an overwhelming number of consents for sub-studies. This discussion led to my observation about a much-ignored corollary to one of the principles of informed consent: that the patient is entitled to an explanation of the procedure, risks, and benefits "in language he can reasonably be expected to understand."

That last phrase usually implies preparing materials in lay language, but what is owed to the patient that reasonably can be expected to understand the technical language? For example, when I've been an inpatient research volunteer, nurses have brought be informed consents for certain studies. On reading the document, I had questions, some on the molecular pharmacology of the agents, some procedural, and I suggested the easiest way for me to get the information was probably to read the actual research protocol. As long as that document would not affect blinding, is that ethically reasonable? Howard C. Berkowitz 12:04, 24 May 2008 (CDT)

Computer interactions in healthcare

This is getting into a specialty of mine, although I've probably done more with the nontrivial matter of clinician-friendly interaction with computers.

Apropos of patient participation, around 1970, we were adapting some of G. Octo Barnett's software from the Laboratory of Computer Science at Mass General. When we talked to some of the investigators, we heard about a recent trial: they had taken two sets of OB/GYN new patients, and had a resident do the history on one arm, while we used a computer-driven questionnaire (we didn't yet know we were supposed to call it an "expert system") on the other arm.

The subjective measurement was patient satisfaction, and the computer did much better than the residents. On followup interviewing, the patients said they liked how patient and nonjudgmental the computer had been, which was the other arm's complaint about the residents. Perhaps there's a comment here about medical education and overly fatigued residents.

Trying to focus more on this article, the problem has several dimensions. Some of these overlap computer-clinician communications, and some are distinct. For example, many patients can read narrative terms such as an "uncommon" adverse event, but not have a real sense of probability. It also depends on the level of the material being viewed by someone without fairly extensive training. Some material can be well-written and usable, but I remember a relative's panic on reading her surgical pathology note, and not understanding there was a difference between a lymphatic and a lymph node.

There is a very wide spectrum from those that can be sent straight to MEDLINE, to sources such as eMedicine, and then to lay sources. Do you think we can offer guidance?Howard C. Berkowitz 10:08, 25 June 2008 (CDT)