Director of the Pacific Family Mediation Institute
Interviewed by Julian Portilla, 2004
This rough transcript provides a text alternative to audio. We apologize for occasional errors and unintelligible sections (which are marked with ???).
A: So, the parties to the dialogues, for example, would be a patient getting, at least at an outset, a new diagnosis and some idea of role play, what the doctor might be thinking in terms of what they tell this person, how this person might be responding, so you get some sense of a face to this. What does a face to diagnosis look like? What is a doctor thinking? What is the patient thinking? What kind of information would be helpful? For example the role for the doctor would include the next step. Instead of, "Go make your will," it would be, "There are some people I'd like you to see; there are some tests I'd like you to have; let me help you get that set up." It might include for the patient, "What do I do about insurance?" "Who's going to pay for this?" and so on.
Q: Is this to prepare, like a mock dialogue? Or is this actually .
A: Well, it's based on the real dialogues, but what you're creating for training purposes, for patient advocacy groups and for doctor groups, are simulations. They're as close to real as you can get. They're based on what kinds of conversations people have had, what's terrified them, and how do you correct that? How do you get people in a situation where people can manage their care and talk to the people that can help them manage their care? So the first one was on diagnosis, which we presented and got feedback on them as to how to make them better.
The next one that I'm working on now has to do with access to insurance companies, and how you create a dialogue that will be patient-sensitive. There is that dialogue. The other planned dialogues include, "How do you access Web information on clinical trials?" (pretty much, what's the simplest way to do this and how do you then present your information to doctors)? So that dialogue is all about a patient coming in now with the information, being able to give it to a physician, asking for review times and feedback, which is a totally new occupation for both patient and for these doctors. What I have found through the course of my own experience, and what a lot of the other women have found, is that the more research-oriented physicians will not want their patients in any experimental clinical trials until it's proven, but in these situations, you don't have ten years to prove it because all these people will be dead. It's really a matter of informing doctors in a way that's non-threatening and have doctors able to provide information that's sensible in terms of where different patients are.
Same with insurance: It will not cover anything that's not the standard of treatment in a given area; on the other hand, to wait for an improved standard of treatment means that the person will die. You're trying to put a face on translational research, basically. To get it from a Petri dish to the patient and make sure you check out what's going to be fatal. Since I started doing this, which is a crash course in this, I've learned a lot about what does or doesn't happen because of the number of variables that aren't considered. What is the place of gynecological cancers and how do they sort out what gets attention? Does it sort out by gender? Does prostate cancer get more attention or funding for men than gynecological cancers do for women? Among gynecological cancers, if ovarian is the scariest one, does that mean no researchers want to do the research on that one? There are some very interesting questions raised, and some of these need to come into the patient advocacy area. First of all, to empower people to do patient advocacy work and then to understand that a part of that is not only for generations to come, you have to have some element for yourself to engage in this. The institutes that are research-oriented want to enlist you as part of this project, to promote clinical trials to bring in people with or without disease to participate.