Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Harden: Is this computer program still being kept up?

Baird: Yes. As the program grew, big pieces of what I was doing were taken over by other people. For example, there is now one person whose task it is to manage the laboratory and data entry. Every week we are given a list of all the study participants and their laboratory data. A computer programmer has designed a program to put in data from several sources. We also have case managers now who see the patients in the clinics. That was another part of my function. Then we have study coordinators who run the studies for various research drugs. That was another task I did. Then there is also recruitment. We have another person who contacts the community information networks, decides [whether] to advertise or not, and sends announcements to the newspapers. She and her staff are another part of the group. What I was doing in my job has now been expanded to a large group of about 35 to 40 people. It is very nice to see the program grow to that extent.

As the program was expanded, it was also refined. Dr. Lane and Dr. Masur remain the two physicians in charge, but now they have another level of positions below them. These are the PI's [principal investigators] of which there are eight. The top two in the organization are Dr. Lane and Dr. Masur, and then, at the next level, are the attending physicians and the principal investigators. They write all of the protocols in cooperation with Dr. Lane and Dr. Masur. Half of the study coordinators work for NIAID and the other half work for the Clinical Center under Critical Care Medicine. The case managers work for the Nursing Department under the Clinical Center. In addition, there are laboratory and data management people. It is a quite a large organization.

Harden: In their roles as case managers, have nurses moved into job classifications other than nursing?

Baird: No. The primary classification of the nurses is nursing. At first I had many additional functions than just nursing. My job title was a “health specialist.” This was a new role for a nurse. Therefore the job description was new and for several years it was only temporary. Then my position was later written to include more nursing functions, and I became a “nursing specialist.” Each time I was to be promoted, the job description had to be rewritten. When I became a twelve [GS12] was the last time it was rewritten. I doubt if it can be rewritten as a GS-13. All the study coordinators are at a GS-12 level. Since I am the study coordinator who has been here the longest, I have a window in my office. The other study coordinators said that not only was I the oldest but I had been here the longest, so they thought that I should have the window office. There is some deference for age and experience.

Rodrigues: This implies that you acquired this particular office later. Initially was your office on the eleventh floor [of the Clinical Center] or somewhere else?

Baird: Initially, I had a cart, and I pushed it around from floor to floor. I had no office, no desk, nothing. I had no base because there were no offices. Space was, and continues to be, a problem. Dr. Masur told me that I could put my personal things in an office of one of the anesthesiologists in the department who was away for six months. I had patient files, test tubes, syringes, and other items on the cart. When I was given some space, I kept the cart around just for sentimental reasons. When I was using the cart, I would cover it over at the end of the day so no one could see what was on it, and I would try to find a corner somewhere to put it. I did not want people taking syringes and so on. The cart would not fit in anyone's office.

For a couple of years I worked from my cart, and then I started sharing offices. Critical Care Medicine is like a step child. It is not an institute, so its space is very limited. For a long time, about a year or so, I shared an office with someone on the fifth floor in the clinic, but this was Neurology's clinic, so we knew it was just temporary. Then we were moved to another office about eight feet by ten feet in size, with three people in it. It was essentially a hallway, because people had to walk through to get to their office. That was one of the worst situations. Then the eleventh floor was organized to have clinical space, so we moved to the eleventh floor. This clinic on the eighth floor [we are in now] was just opened about three years ago. Actually, Dr. Lane, Vicky Davey, and Bill Barrick designed what they wanted for the clinic. The case managers have the largest rooms, since they see more patients and occasionally do a physical assessment. The study coordinators have the smaller rooms since we see fewer patients than the case managers. Our primary role is to manage the whole study so we will do the initial assessment of the patients. There are two doctors in the clinic. We have been based here for about three years, and these have been the nicest surroundings that we have had. We all have computers, and we have all sorts of support staff to help us, too.

Harden: As a study coordinator, do you do only one study, and another study coordinator manages a different study?

Baird: Usually. Sometimes we will manage two or three studies at the same time. Right now I am managing two studies. One of them is moving quickly and one of them is moving rather slowly.

Harden: What are they on?

Baird: One of them is evaluating a drug for toxoplasmosis. The drug is 566 C80, or Mepron, and it was approved by the FDA [Food and Drug Administration] last September [1992]. It had already gained approval for treatment of Pneumocystis pneumonia, although it treats both infections. It is an anti-protozoal agent, so it is effective both against Pneumocystis pneumonia and toxoplasmosis. It was approved for treatment of Pneumocystis pneumonia, but we know that physicians in the community are probably writing prescriptions for it for toxoplasmosis. The Burroughs Wellcome Company, which is the drug company that makes it, decided to close those studies and gather any other data in another fashion.

I am continuing to manage that study. There is just one person on it and he is still doing well. He comes in every three months, and when he comes in, he sees the case manager. For the months he does not come in, she calls his doctor and gets the information faxed to us. We keep track of the patient on a monthly basis, even though he only comes here [to the NIH] once every three months.

The other study is on a new drug called HPMPC. This is made by Gilead Pharmaceuticals, which is a new, very small drug company in San Francisco. This drug has activity against CMV [cytomegalovirus]. We started this study in September [1992]. We are now fifteen patients into the study. Tomorrow I will screen the sixteenth patient. The study is for sixteen patients. The drug has shown some good effect against the virus. It has some toxicities that we are trying to control. We have had several amendments and changes to the protocol as the study proceeded.

A few years ago, in 1985, I worked on the ganciclovir study, and that drug finally was approved by the FDA for the treatment of CMV retinitis. Then, in 1989, I managed the foscarnet study. The data from the studies at the NIH was very influential in obtaining FDA approval. I have been fortunate to be involved in studies of a number of drugs that have received FDA approval. It is a nice reward, after the hard work of gathering the data and getting it organized, that ultimately, there are millions of people getting this drug that would not ordinarily have done so because we have done a good job.

Rodrigues: Would you say the NIH was unique in using this approach to research in which nurses were more involved?

Baird: Yes, we were unique. Now, I think we see a lot of copying. I think the extramural program has realized that this type of research is a good area for a nurse. A nurse works well in such a position because she can deal with diverse tasks. The extramural program now has adopted this, and even some private, non NIH funded groups are using nurses [for such research]. Ten years ago, they were using medical students or doctors just out of medical school. Research was not the domain of a nurse. The nurse now has very nicely fitted in, done a good job, and gained acceptance in doing this kind of work.

Harden: Do you think that the acceptance of nurses in research occurred now because society decided that women might have heads on their shoulders and be able to do things like this, in contrast to a couple of years ago when it was just assumed that they could not?

Baird: I think it all went together–there were many more female physicians, and nurses were given more responsibility. I know the NIH is a unique place because I formerly worked at Northern Virginia Doctors Hospital. This was a doctor controlled hospital. The atmosphere was incredibly different. Of course, this was ten or twelve years ago. Then, when a doctor walked into the nurses' station, the nurse stood up. The nurse gave the doctor her seat and she stood. When the doctor wanted to make rounds, the nurse walked behind the doctor with the patient's chart. They had a protocol for the way the nurses should behave that was clearly out of the nineteenth century. I am still certain a hospital functions this way in many parts of the country.

At the NIH and at some of the larger hospitals we have seen an incredible transition in the past ten or fifteen years. For instance, nurses are now no longer wearing their caps. Most nurses liked wearing the caps and uniforms because it was distinctive. It separated them from the laboratory technicians, and the floor washers. But what happened was that nurses felt they were being identified in a demeaning way. They thought that the cap was demeaning because it had its origin as a dust cap. Then, they also felt that the uniform was demeaning. Many nurses have gotten away from wearing the uniform. All of these changes have occurred. The uniform is not being worn in many places, the four-year nursing degree program is now being required by many hospitals. There were two kinds of nurses' training, but diploma schools are now out of existence. In the nursing field itself there have been many changes–the acceptance of nurses by doctors, and then women's rights and so forth. This is a great time for all this to occur. It has been a change for the better, there is a health care team now.

Harden: Would you say, then, that professional protocol means very little at the NIH, that the nurse does not have to waste energy worrying about whether she is standing behind a doctor or in front, that there is more of a partnership?

Baird: Yes. The other beautiful thing at the NIH is that there is no profit motivation. When you work here you do not realize that this can be a problem elsewhere. If you work in a community hospital, or even in a medical center hospital that is doing research, there is still some profit element. This requires the doctor and everyone else to think twice about whether or not they want to do a test or how much it costs. The minute you have to think about how much something costs, it is going to affect the pureness, so to speak, of your job. You cannot think only about the research, you have to think about the money. You cannot think about what is the ideal approach because there are always budgets and monetary things to worry about. Here, there is not this constant profit issue. Without that pressure, doctors and nurses work more as colleagues, as a team rather than as a hierarchy. You do not see the hierarchy at the NIH. We all gather on Friday afternoon, and we have everybody there, from the directors, Dr. Lane and Dr. Masur, to nutritionists, pharmacists, case managers, nurses, and nursing assistants. Everybody is in that room and everybody has input as to the care of the patient whom they are discussing at that time. It is truly very team oriented, and there is no hierarchy to worry about. That is very conducive to good work.

continued on page 04

 

 

   
       
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