E. Michael D. (“Mike”) SCOTTis co-founder and president of Prostate Cancer International (PCaI), a small, prostate cancer-specific, not-for-profit, educational and informational organization based in Virginia Beach, Virginia, USA. PCaI offers global services primarily through The “New” Prostate Cancer InfoLink (a free, daily prostate cancer news service) and The “New” Prostate Cancer InfoLink Social Network, through which > 4,500 patients are now able to intercommunicate and newly diagnosed patients and their families can start to understand how to think about the vast range of options that may be available to them.
In his professional life, Mr. Scott is an executive vice president of Independence HealthCom Strategies Group,a privately held group of health care communications companies based in Philadelphia, Pennsylvania, where he has worked in a variety of positions since moving from the UK to the USA in 1985. He had previously been the sole proprietor of a scientific and medical communications consulting company in the UK.He has spent his entire 40-year career in areas related to scientific and health care-related communications. His primary personal interests today are in professional and patient communications related to the development and clinical use of products for the diagnosis and treatment of various forms of cancer and rare disorders, and in issues affecting access to these therapies for appropriate patients.
Mr. Scott is also the current Board chairman of the National Organization for Rare Diseases (NORD) and a member of the Board of Directors of the International Myeloma Foundation (IMF) He is an individual member of the American Society of Hematology, the Drug Information Association, the Society for Participatory Medicine, and the Alliance for a Stronger FDA. He is an affiliate member of the American Society of Clinical Oncology and the American Urological Association.
I met Mike, on the ‘New’ Prostate Cancer InfoLink while reaching out and planning for a prostate cancer discussion on The Cure Panel Talk Show. In his interview with me, Mike touches upon his journey in healthcare communications spanning 40 years. Mike’s answers to my questions are incredible and very well thought out. It makes for an amazing read.
Hope you enjoy it.
Mike: I’ve worked in scientific and medical communications for just over 40 years. When Netscape first went live in December 1994, I immediately realized that the nature of healthcare communication was about to change in ways that none of us had previously imagined. One of those changes was going to be greater ease of access for patients to information about complex and life-changing disorders. I had spent much of the prior 5 years running educational programs for urologists and oncologists about changes in the way prostate cancer could be treated. Frankly, I picked prostate cancer as a “test disease” because I knew a lot about it and so we built the original “Prostate Cancer InfoLink” (parts of which are still archived, with permission, on another web site). It was “up and running” by early 1995 (at about the same time as Loren Buhle was developing the first version of OncoLink at the University of Pennsylvania). The first comments I got were that “Old men aren’t ever going to use the Internet. Why are you doing that?”
The original, hand-built web site was, at one point, getting well over 100,000 page hits a month in about 1997. It was largely incapacitated by a virus in the early 2000s. With the development of blogging and social media, my friend Arnon Krongrad (the first surgeon to start doing laparoscopic radical prostatectomies here in America) persuaded me to restart the services that we had pioneered back in the 1990s. However, throughout all of this, what has driven me is the idea of “participatory medicine” … the concept that informed and knowledgeable patients working with expert clinicians who actually listen to their patients will be able to come to the best possible decisions about the management of the health of that patient in ways that are really valued by the patient (as opposed to just the clinician). Health care is about individuals. We are all different. “Cookie cutter medicine” is not good health care. However, patients who want the best possible care for complex disorders like prostate cancer need to educate themselves and work closely with their doctors to accomplish mutually agreed goals. The services currently being provided by Prostate Cancer International are intended to support that process.
Me: The “New” Prostate Cancer InfoLink Social Media Network is very helpful and I have noticed frank and open discussions on the forum, very unlike many others. You personally welcome each and every new member, thereby making yourself approachable. Mike, how do you manage this?
Mike: Well, every day has 24 hours, and I only, usually, sleep for about 4 or 5 of those hours. I’d get bored very quickly if I didn’t have plenty of things to do. We do, indeed, try to personally welcome every new member of the social network, but I am conscious that we occasionally miss one or two, particularly when I am traveling or attending major meetings. And we are far from perfect!
Me: In your experience with communicating with thousands of prostate cancer patients, what do you think are some of the most common mistakes that patients commit and what in your opinion do physicians overlook while deciding course of treatment?
Mike: Doctors today don’t have enough time to spend with their patients. Their days are often filled with bureaucracy and paperwork. Patients can easily panic when they hear the word “cancer”, and assume they will be dead in 6 months if they don’t “do something” immediately. I don’t think patients “make mistakes” and I don’t think doctors “overlook” things. However, I do think there is a vast and awe-inspiring communication gap that is very rarely addressed early on. The nature of that communication gap is often colored by whether the patient has just been diagnosed with low-risk, Gleason 6 prostate cancer in 8% of a single biopsy core at age 72 or with aggressive metastatic prostate cancer at age 48. However, the problem is that the newly diagnosed patient often has no idea of whatis “real” or what is possible and any good doctor feels ethically and morally obliged to offer the patient as much hope as is reasonably possible. All too often, there is a complete misalignment of goals as a consequence. Patients don’t actually hear what they are being told; physicians use medical language that is incomprehensible (or at best completely new) to the patient; the communication gap often grows as opposed to closing, and then people make decisions without understanding the potential consequences of those decisions.
Me: Irrespective of type of treatment opted for, what has been your observation as to the most common side effect of prostate cancer treatment?
Mike: Because the first specialist that most men see when they get diagnosed with localized prostate cancer is a urologist, and urologists have been trained for years to believe that radical surgery is the “gold standard” for treatment of localized prostate cancer, many men get treated surgically. Whether they all really need treatment at all (as opposed to some form of expectant management like active surveillance) is highly debatable, but since so many men do have surgical treatment (rightly or wrongly), it is inevitable that some degree of incontinence and a high degree of erectile dysfunction are among the commonest side effects of such treatment. However (and I have no actual evidence to support this), my suspicion has long been that the two most common side effects of prostate cancer treatment areactually depression and loss of real intimacy – as the consequences of diagnosis and treatment “kick in”. That depression can affect the patients and their partners (and other family members too). The men often feel “less of a man” (with severe consequences to their self-confidence and sense of self-worth) and the partners are profoundly impacted by a sense of physical and mental loss of intimacy. These are things that all too many couples have a really hard time talking about and dealing with. For the younger couples, this combination of depression and loss of intimacy can be truly devastating.
Me: It is largely known that prostate cancer is an age-related disease. So, how do we explain men in their 30s being diagnosed with prostate cancer?
Mike: When people start to talk about prostate cancer as being an “age-related” disease, my first reaction is always to try to define exactly what they mean. There is absolutely no doubt at all that the vast majority of clinical cases of prostate cancer (whether indolent or clinically significant) are identified and diagnosed in men who are > 55 years of age. However, I am also aware of men who have been diagnosed and treated at ages as low as 26 years of age. What we have almost no really good information about includes the following:
(a) What initiates the development of prostate cancer? In other words, could there be things we are doing to male children in the womb and early childhood that is affecting their risk for prostate cancer 30, 50, and 70 years later?
(b) What impacts the speed at which more aggressive forms of prostate cancer develop?
(c) Why do some forms of prostate cancer appear to be incurable even when we seem to have caught them early enough to treat them with curative intent?
In the absence of this type of knowledge, it is hard to really understand to what extent prostate cancer is “just” age related, because there are so many different factors at play and that probably have to come together for us to be able to identify the combination of risk factors that actually place any one man (young or older) at risk for clinically significant prostate cancer that needs early, curative treatment (if that is possible).
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