Many HPS’ers that have been around for a few years might remember the film crew that came to conference two years ago from the Stanford Center for Bioethics. They filmed a good deal of conference and conducted a number of interviews. Since then they’ve done additional filming with Ashley and I.
The project is being done in two parts. The first part was a half-hour film that is focusing on the issues surrounding a patient advocacy group working so closely with investigators on a clinical trial. This film is intended to be used as part of a medical school curriculum.
The filmmakers have applied for an additional grant that would allow them to make an hour-long film focusing more on the issues surrounding living with a chronic illness. We’re all hoping that one day it airs on PBS or some other well-known broadcast network.
Yesterday the half-hour film was screened at the University of Washington Medical School for a class there, and today it was screened at Stanford for 150 medical students. Donna and I were there via Webcams on our desks. It was quite a strange experience speaking to such a large group while just sitting at your desk. They could see us – we could see us – but we couldn’t see them.
I think it actually went very well, and I hope that as Stamford rolls out this project we’re able to do it again. I think I find the students, and their questions, as interesting as they might find us.
I was listening very carefully to the audience reaction to the film even though I couldn’t see them. There’s one part of the film where I’m joking around, but I admit that when I first entered the protocol, I wondered if the term “sugar pill” was literal. I wondered if I cut the capsules open, and tasted them, would I be able to tell if I was on the drug. (I NEVER did it by the way!!!!) There’s another part where I talk about being new in the trial seeing every strange symptom as possible evidence that you’re getting the active drug. I had developed a minor rash after being in the trial a few weeks, and I thought to myself, SCORE!!! I knew this was a side effect in an earlier trial. They seemed to find this part humorous – and I was so glad. I think you remember things that are funny. Not only, of course, do I hope the students learn what their professors are trying to teach about ethics, but of course, I also want HPS to stick in their brains like gum on the bottom of a sneaker!
One very nice student spoke up about a clinical trial he’d learned about in another class involving the use of stem cells. He was very flattering and suggested there should be a public relations campaign to showcase the “brave” stories of patients who make future treatments possible. I really did appreciate the sentiment, but I’m never comfortable letting anyone call me a hero. Part of it is pure modesty. Part of it is I don’t see much heroic in trying to save your own life, as well as the lives of other future HPS’ers someday. Of course I recognize that I might never personally benefit from the research I participate in at NIH – but I’d be lying if I said I didn’t somewhere hope I get lucky.
The other reason it feels strange to me is that I think all HPS’ers are heroes, and I don’t want to be singled out for this unless it’s recognized that I’m simply perhaps a face for many faces. Not everyone is a candidate for clinical trials for a variety of reasons – even though they might be just as willing and eager to volunteer as I am. They are no less heroic. This is truly a group effort. We all have a role to play – every one of us – and I think recognizing the possibilities the future might hold, and being able to get involved and get close to people and participate anyway, is heroic on the part of everyone involved and not just me.
It was one part where I stammered around a bit.
As the project progresses, I’ll continue to post updates.
The project is being done in two parts. The first part was a half-hour film that is focusing on the issues surrounding a patient advocacy group working so closely with investigators on a clinical trial. This film is intended to be used as part of a medical school curriculum.
The filmmakers have applied for an additional grant that would allow them to make an hour-long film focusing more on the issues surrounding living with a chronic illness. We’re all hoping that one day it airs on PBS or some other well-known broadcast network.
Yesterday the half-hour film was screened at the University of Washington Medical School for a class there, and today it was screened at Stanford for 150 medical students. Donna and I were there via Webcams on our desks. It was quite a strange experience speaking to such a large group while just sitting at your desk. They could see us – we could see us – but we couldn’t see them.
I think it actually went very well, and I hope that as Stamford rolls out this project we’re able to do it again. I think I find the students, and their questions, as interesting as they might find us.
I was listening very carefully to the audience reaction to the film even though I couldn’t see them. There’s one part of the film where I’m joking around, but I admit that when I first entered the protocol, I wondered if the term “sugar pill” was literal. I wondered if I cut the capsules open, and tasted them, would I be able to tell if I was on the drug. (I NEVER did it by the way!!!!) There’s another part where I talk about being new in the trial seeing every strange symptom as possible evidence that you’re getting the active drug. I had developed a minor rash after being in the trial a few weeks, and I thought to myself, SCORE!!! I knew this was a side effect in an earlier trial. They seemed to find this part humorous – and I was so glad. I think you remember things that are funny. Not only, of course, do I hope the students learn what their professors are trying to teach about ethics, but of course, I also want HPS to stick in their brains like gum on the bottom of a sneaker!
One very nice student spoke up about a clinical trial he’d learned about in another class involving the use of stem cells. He was very flattering and suggested there should be a public relations campaign to showcase the “brave” stories of patients who make future treatments possible. I really did appreciate the sentiment, but I’m never comfortable letting anyone call me a hero. Part of it is pure modesty. Part of it is I don’t see much heroic in trying to save your own life, as well as the lives of other future HPS’ers someday. Of course I recognize that I might never personally benefit from the research I participate in at NIH – but I’d be lying if I said I didn’t somewhere hope I get lucky.
The other reason it feels strange to me is that I think all HPS’ers are heroes, and I don’t want to be singled out for this unless it’s recognized that I’m simply perhaps a face for many faces. Not everyone is a candidate for clinical trials for a variety of reasons – even though they might be just as willing and eager to volunteer as I am. They are no less heroic. This is truly a group effort. We all have a role to play – every one of us – and I think recognizing the possibilities the future might hold, and being able to get involved and get close to people and participate anyway, is heroic on the part of everyone involved and not just me.
It was one part where I stammered around a bit.
As the project progresses, I’ll continue to post updates.
Comments
I do use magnification on my computer - not the voice because it would draw my 20 month old into what I'm doing and then I wouldn't get any time online!
I do use a cane and feel very good about it. I am trying more and more to get involved in the blind community in my area and it is helping me adjust.
Thank you for your comment.