Fitzhugh Mullan, Institute of Medicine
Just a couple of comments as somebody who has had the privilege of revisiting the survivorship world after having been less involved than in recent years. One anecdote that I wanted to share with you came back to me this morning from way back in my experience. And I think it perhaps suggests how far we have come. If we think what we are doing now is important, to me anyway, this anecdote tells how really important it is.
I am guessing the year was 1980 or 1981, well before the National Coalition for Cancer Survivorship (NCCS) was born, or before “survivorship” was a term of activity in the oncology world. The American Cancer Society (ACS), to its credit, held a meeting that I attended in Baltimore called the Cured Cancer Congress. My recollection was this was an initiative on its part, so there may have been other such meetings around the country. As a “recently off the emergency list” cancer patient at the time, I got asked to come and say a few words. I do not recall at all what I talked about, but I know after the session during a break a woman came up to me and very furtively, and I do not think I am overemphasizing, she sort of looked over one shoulder and then the other and said, “I know I am not supposed to be here. I am a breast cancer patient and I was only diagnosed three months ago, as in I am not cured.”
She was terribly apologetic, but wanted to hear. Which reminds me of what the world was like before this broader based use of the term and the concept “survivorship” was with us. Again, the notion she wasn’t cured, so she belonged in some other domain. And that actually was very helpful to
me, because I struggled afterwards thinking about where she did belong. I felt like we were both there together. I was a few months down the road from her, but basically, our commonality was far greater than our difference. And she was sort of treating me like I was back together again, and she wasn’t, which of course was not the case.
Just a couple of thoughts on the survivorship care plan, which I read about and was elated about as I mentioned earlier, and have now had another few hours to think about it. And particularly for those of us who were in this last session, the very provocative, and even in some cases knotty, issues about what is entailed in this effort. I began thinking, sort of stepping back from the technicalities and the problems of “Is this a treatment plan?” or “Is this a patient guidance plan?” or “Is this some sort of cheerleading after the fact plan?” What exactly might go into this document or these documents? Or was it a document at all? And saluting the complexities of all of that. I tried to think in my experience, what longstanding documents, or what documents I had engaged that helped me either as a physician or as a person. First, in terms of practice in pediatrics, there is something known to some of you I suspect, the Denver Developmental Screening Test, the DDST, which was developed in Denver some years ago to provide a way of measuring pediatric development, or child development in a fairly simple, fairly straightforward way. But it has been kind of dumbed down and has been made pretty straightforward. It is an excellent tool for taking on what can be a difficult field of how is a child doing. So, a DDST kind of thing for cancer survivors. Now, immediately the image falls apart, because cancer is a family of diseases, and there are different stages. But a document of that sort that would be a standard part of an oncology chart might be a thought.
A second common pediatric item is the shot record. The shot record bears things in common, of course, with oncology care, although again, it is far simpler. But you have got shots that are given over time for people who are moving around, for a disease or a vaccination portfolio itself that is evolving. And the standard shot record, of course, was some piece of paper carried by the parent, usually yellow, often tattered, most often incomplete. Recently, as part of a CDC initiative, there is now, and I don’t know the extent of its use, there is a computerized record which is light years better than the paper record. This group needs no exhortation that if whatever the material that is to be tracked is computer available, it is just ever so much better. And having lived through the yellow tattered record into the computer record, it is just a world of difference. And that again, I commend to those deliberating this.
And a final provocative but perhaps totally irrelevant example comes to mind. When I step back in my life and think about what is the most interesting record about myself that I stumble on from time to time, there
aren’t many that I can think of that are easily available. But some years ago when I turned a certain age, I am not quite sure what it was, but the Social Security Administration began to send me an annual letter that told me when I was eligible for Social Security benefits. It also included my earnings history back to the first paycheck I earned as a teenager. I mean $114 recorded in 1950 something. I thought, “Whoa, where did that come from?” It was actually fascinating to see this record. Now, again, we are tracking one thing, which is income which is far simpler than the variety of things we track in medicine. But again, having that available to the customer, and these are again fairly simple data, is key. But that ability for a survivor to look back on key points in their survivorship would be invaluable. I do not quite know what the key points might be, but such a record might get filled in by both oncologists and primary care physicians along the way, and would be a track record that they would have of the essence or elements of their health and health care.
These are thoughts to consider, none of them tailor made. But I think the discussion that we are having is absolutely terrific, and the outcome in terms of cancer care and quality cancer survivorship stands to be terrific. So, for the IOM for hosting, the committee for doing the work they have done on the report, and for those of you who were involved in the follow-through and follow-on in the report, I just think this is terrific work. I salute you, and have a good lunch.