Editor’s note: This is a planned public debate between Mark Dunning and Jennifer Phillips, the two primary contributors to this blog. The ideas expressed in the posts during this debate will be purposely provocative and unfinished to invite a response from the other party. We hope you find the discussion valuable.
"Each of us is entitled to his own opinion, but not to his own facts.”
Daniel Patrick Moynihan
Mark began this debate by airing some grievances against the scientific and medical communities. The central charges as I read them (from my anti-hope enclave) are as follows:
1. Through their perceived reluctance to communicate and network on Usher-related research projects, scientists are impeding progress toward a cure and engendering mistrust and betrayal among patients and families.
2. By limiting patient education to well-established medical facts, and/or neglecting to educate themselves on the latest research, doctors are failing to give hope to families reeling from a diagnosis of Usher syndrome.
Formidable challenges, indeed. So, here’s my attempt at rebuttal, from the top:
Just as Mark uploaded his last post, I was preparing to travel to Ft. Lauderdale, Florida for the Annual Meeting of the Association for Vision Research and Ophthalmology. From May 2nd to the 6th, more than 11,000 scientists and clinicians convened under one roof to speak, listen, learn and share ideas about this year’s topic: “For Sight: The Future of Eye and Vision Research”. Mind you, not all 11,000+ were there to talk about Usher syndrome, but there were literally hundreds—hundreds!—of presentations on developing techniques for better diagnosis and treatment of RP. I spoke with a huge number of people, laid the groundwork for some new collaborations, and came back to Oregon bubbling over with ideas for new research directions to pursue. Coincidentally, as that meeting was underway, a paper was published in the Journal of Clinical Investigation presenting collaborative work between myself and clinician-scientists at the University of Cologne in Germany. Thus, I was practically wallowing in a vat of collaborative goodness as I read the words of my esteemed co-blogger:
"Researchers are loathe to discuss any research that is currently underway because until the results are not only in but have been peer reviewed, they can not be trusted to be fact. Understandable. This is especially true when discussing research done by someone else because, obviously, if you’re not doing the research and the results have yet to be published, you can’t possibly know the results.”
My first thought was “Whoa, dude, you are so wrong”. But then I started to wonder what might have led him to form such an opinion. I mean, Mark is a smart guy. More to the point, he’s a proactive guy who’s taken the initiative to build a network of families and physicians and researchers working toward the common goal of fighting back against Usher syndrome. He hobnobs with some pretty heavy hitters in the Usher research community, the kind of people who never remember my name—probably because I devolve into a groveling, insignificant puppy in their presence…but I digress. My point is, if someone like Mark, who’s really got the inside track on the research angle, has this impression of the research world, what are we scientists are doing wrong?
The answer, while multi-faceted, boils down to communication lag:
Disconnect between the routine interactions within the research/clinical community and the extent to which patients and families are aware of these goings on.
While I was at the ARVO meeting I asked a nice lady at the information desk about mainstream press coverage of the meeting. I mean, nearly 12,000 people converging on South Florida to talk about eyes has to be newsworthy, right? She looked at me as if I had sprouted tentacles, and an awkward conversation ensued, during which I tried (in vain, I think) to convince her that my question was only meant to acquire general information and not some ego-driven attempt to pimp my own highly important research findings. My take-home message from that encounter was that, in general, teeming nerd hordes don’t make very provocative headlines. Go figure. The good citizens of Ft. Lauderdale had no idea what we were up to in there, and all over the world similar stories are playing out on a regular basis. Large scientific and medical conferences with attendance well into the thousands are commonplace. We talk to each other a LOT—we share boatloads of unpublished data, swap cool reagents, and forge integrative collaborations, all on an astonishingly frequent basis—and you’d never know it. Because it isn’t ‘news’. Which brings me to:
Unlike scientists, who tend to err on the side of understatement and uncertainty (because after all, a hypothesis can never be proved—it can only be disproved), many journalists trend the other way, often favoring sensationalism over nuance. Most scientists, while perfectly willing to share details of their work with one another, are somewhat more wary sharing similar details with the media until the peer-reviewed publication process is complete. There are exceptions from time to time. Occasionally, a researcher will engage in what has been termed ‘science by press release’. Usually this is accomplished by holding press conferences in conjunction with or in anticipation of a publication, whereby the researcher may use the public forum to speculate or opine on findings that go beyond the peer-reviewed data. The press, therefore, tend to report on a rather unbalanced view of the topic, and it usually takes the larger scientific community some time to put the findings in context. The hype over the ‘Ida’ fossil published last year is one such example; the utterly unfounded ‘link’ between autism and the MMR vaccine is another.
Point being, it is not generally in the best interest of science or the medical applications thereof to make public pronouncements that can’t be backed up by good hard data. You, the patients and families, may wish to hear more preliminary reports, and we may wish to provide them, but in reality it would be difficult to do so on a large scale without creating a lot of misunderstanding and false hope.
Competetive research environments
I don’t mean to suggest that the research community as a whole is 100% transparent about everything we do all the time. When researchers discover they’re working on similar projects, they will often agree to pool their findings and collaborate—but not always. Obtaining and retaining funding is a competitive process, after all. Research grants are in relatively short supply and are awarded based on the uniqueness and feasibility of the proposed experiments. Furthermore, far from being a mere benchmark of personal achievement, funding is essential not only to finance the research materials, but the personnel doing the experiments. Running a research program is in many ways like running a small business, and getting—or keeping—a research grant is often the difference between hiring on an extra technician and having to let some lab members go. A small business owner wouldn’t play fast and loose with trade secrets that could bankrupt his or her company—is it fair to expect research scientists to take a similar risk?
Are there things we, as scientists can do to combat this perception of paranoid isolationism? Sure—in fact, that’s one of the reasons I began to contribute to this blog. That said, I hope the above points have helped to illustrate that a) unpublished results are shared freely in professional settings and b) there are necessary and legitimate limits to how and when a researcher should divulge these unpublished results.
Now, on to defend the poor doctors who have been painted with the same anti-hope brush. Again, Mark correctly identifies one motivation for sticking to hard facts when delivering a diagnosis, namely the ethics involved in leveling with patients and families about bad medical news, which actually goes quite a bit beyond ‘do no harm’. Doctors are schooled pretty hard on this. On a personal level, they may long to soft-pedal the news, but they are ethically compelled to tell the whole truth, however grim or devastating it might be, because of all the ramifications of informed consent and the general trend away from a paternalistic practice model to one in which patients are encouraged to be active participants in their own health care choices. Mark, speaking from the patient/family perspective, made the point that the delivery of such news would go down a lot better if combined with hopeful news about nascent treatments, etc. As reasonable as that sounds, there are, again, a number of difficulties in making it a reality. And once again, it boils down to communication:
Some doctors, while excellent clinicians, are wretched communicators. This is a ‘soft’ skill that can be difficult to teach.
The limits of specialized care
The health care provider who delivers a diagnosis of Usher syndrome may not be a specialist in this disease. Usher syndrome is a fairly rare and exceedingly complex disease. It would be onerous indeed to expect every clinician who was ever likely to see an undiagnosed case of Usher syndrome to keep pace with the published research on the topic, let alone stay current on unpublished research endeavors.
Differences of opinion
Different doctors give different ‘weights’ to new experimental findings based on their comfort level with the techniques and/or technology. As such, a doctor might initially choose not to discuss a nascent therapy when first delivering the diagnosis. However, I must add that I feel this choice would only be valid on a temporary basis.
Bedside manner notwithstanding, what a doctor says and what the patient (or family) hears can sometimes differ to an astonishing degree. Dr. David Gorski, a breast cancer surgeon and scientist (and most excellent medical blogger) recently discussed this phenomenon:
“A while back, I saw a patient with breast cancer in her hospital room, a woman I had operated on the day before. I thought I had calmly laid out the situation, reassured her that her tumor was treatable, and told her that she might not need chemotherapy. About an hour later I got a frantic page from the floor. The patient was in tears, and the family was in an uproar. I don’t know how I had done it, but I had somehow given this patient the impression that her situation was hopeless and that she was going to die. When her family arrived to take her home she was crying. Apparently she had interpreted my telling her that she might not need chemotherapy (mainly because of her age and tumor characteristics) as telling her that it was pointless to treat her more. I relearned a valuable lesson that day, one I (and, I daresay, most doctors, no matter how experienced) need to relearn periodically, namely that patients don’t always interpret what I tell them the way I think they will and that sometimes how I view a conversation with a patient may be very different than how the patient viewed the conversation.”
This experience, which is far from unique, argues in favor of delivering a diagnosis in concise, clear, unambiguous terms, and saving details such as treatments on the horizon for subsequent visits.
The lag between research results and clinical applications
I spent about 12 hours of my 5 days at ARVO attending lectures on emerging therapies for retinal degeneration—the majority of which were either stem cell based or gene therapy based. I saw some truly impressive clinical trial results and extremely promising preclinical studies with animal models of RP. Importantly, even as they revealed what were likely the most ambitious achievements of their careers to date, the majority of presenters concluded their talks with cautionary words about extrapolating too much from these findings. Most advocated proceeding with great caution with thorough clinical trials. These are cutting edge therapies, tested under extremely narrow, controlled experimental conditions. History has demonstrated that mainstreaming such treatment options without adequate safety testing across broader patient demographics can have unfortunate consequences. So, as anxious as we all are for a cure, there are extremely good reasons for proceeding in a prudent, science-driven manner.
Again, there are certainly some areas for improvement in communication between physicians and patients, between scientists and physicians, and within each of these groups, but at the end of the day, the facts are what they are. When one speaks of facts, one is referring to informational pieces of objective reality. Factual information is the bread and butter of science and medicine, and scientific research is, essentially, a steadfast embrace of one’s own ignorance of a sought after set of facts. Sure it can be frustrating at times--as Mark (and David Byrne before him) lamented, facts often don’t do what we want them to do. What we have to realize as scientists, and I think, as humans, is that we must allow reality to tell its own story. If we superimpose our hopes for a particular outcome on top of newly discovered ‘facts’, we lose objectivity and risk misinterpreting the findings.