CURATING MEDICAL AND SCIENTIFIC KNOWLEDGE IN THE INFORMATION AGE: A ROLE FOR ACADEMIC HEALTH CENTERS?
As society continues its transition from printbased to digital-based knowledge storage and dissemination, the limits of knowledge become more visibly endless. The places in which this knowledge is stored are also seemingly without limit. With a commensurate sense of too much information, how can this information best be processed and evaluated so that individuals, be they professionals or lay persons, make informed decisions? In the case of medical and scientific knowledge, I believe that academic health centers have the responsibility to be a major part of the solution to this question. They should serve not only as honest and trusted resources for the information they collect and the knowledge they generate, but also as the curators of this knowledge.
WHAT DOES IT MEAN TO "KNOW SOMETHING," ESPECIALLY IN THE 21ST CENTURY?
This deeply philosophical and non-trivial question has been asked for millennia, but it takes on added complexity in the 21st century. The Viennese philosopher, Ludwig Wittgenstein, posited that "the limits of my language mean the limits of my world". But now, in the accelerating expansion of the information age, we are hard pressed to come to terms with what these limits are. Knowledge, when not confined by the capacity of the human brain, trends toward the infinite. The interpretation and understanding of that knowledge is one of the greatest philosophical, practical, and potentially existential problems faced by humans in the age of artificial intelligence and rapidly expanding forms of data aggregation and shared communication.
THE FOURTH INDUSTRIAL REVOLUTION
The 21st century has given rise to the so-called fourth industrial revolution. Following steam (the first), electricity (the second), and digitalization/ computers (the third), the fourth industrial revolution is characterized by “technologic convergence,” in which a vast array of different technologic systems evolve by working together to perform similar tasks. There are many examples of this growing phenomenon, including new synchronies amongst artificial intelligence, robotics, nanotechnology, medical devices, diagnostic modalities, 3D printing, big data accrual and management, sensors, and a never-ending array of apps.
This convergence is occurring in step with supportive market forces that are powering new paradigms for science and healthcare delivery (e.g., crowdfunding of science, as well as healthcare mergers and acquisitions, such as that proposed by CVS Health to acquire Aetna). As the financial side increases its alignment with the growing ranks of convergent technologies, escalations in information availability will drive changes, and potentially even upheavals, in healthcare delivery. Further, since these revolutionary changes are occurring in an environment of weakening regulatory restraints, more and more information and services are being delivered directly to the public, thus bypassing the usual professional safeguards—and by extension—the aegis held and often taken for granted by academe.
KNOWLEDGE EMPOWERMENT AS A FORM OF CONTROL
From a historical perspective, the above trends are transforming (some would say disrupting) fundamental and timeless features of the medical profession and biomedical research. Specifically, the “guild” of medicine and biomedical research, to which all members of academic health centers belong, is rapidly losing its status as the exclusive bearer of specialized knowledge. Because this exclusivity is the hallmark of what it means to be a profession, the rapid externalization of knowledge outside of the “guild” makes it imperative for academic health centers to confront a new competitive reality driven by an ongoing tsunami of real, plausible, implausible, and fake information.
The empowerment that comes from knowledge is not a new revelation-only its scale is new. The 18th century English poet, Alexander Pope, wrote that: "A little learning is a dangerous thing/ Drink deep, or taste not the Pierian spring"2. There certainly is a lot of "little learning" out there! I googled "back pain" and got more than 95 million hits in less than a second; "headache" was even more popular, with nearly 99 million hits; "brain tumor" was a mere 28 million; and "heart transplant" 3.5 million. I then tried a rarer condition, thrombotic thrombocytopenic purpura, with an incidence of around two cases per million population; it garnered an astounding 44 million hits.
Of course, persons seeking information are very limited in the number of sources they actually view. It is not common, I suspect, for internet users to go much beyond even the first or second page of a search. But, the algorithms that determine item and page order are developed and implemented outside of the profession. Where and how, for example, is the information coming from academic health centers situated on these lists? How likely are their sites to be read and compared favorably to others? More importantly, are the high-quality research and clinical recommendations from academic health centers appearing higher in ranking than-let alone simply making it through-the cacophony of lesser quality information?
THE PROBLEM WE NEED TO SOLVE
As serious academics who wish to advance knowledge, we need to ask: Where does the repository for factual and actionable information lie? Or, to put it more prosaically: Where does one turn today—and in the foreseeable future-for expert medical and scientific information? I noted earlier that academic health centers have the responsibility not only to generate and collect this information but also to curate it. "Curate" comes from the Latin curatus: relating to spiritual oversight and to cure. It was originally-and is still-used to describe a clergyman in charge of a parish. For the purposes of this exposition, I use the term “curate” as meaning to select, organize, and present professional or expert knowledge.
Here is a make-shift, semi-classified list of readily available medical and scientific information by their curation status:
- Various libraries, including the National Library of Medicine
- Recognized experts
- The results of randomized, double-blinded clinical trials*
- Specialized and highly tested AI algorithms (e.g., Watson)
- Peer reviewed journals
- Open access publishing (with or without peer review)
- Specialized sites that are disease or scientifically specific, sponsored by various institutes, foundations, disease advocates, etc. (highly variable in degree of curation)
Poorly curated (if at all):
- Various and sundry publications and broadcasts, including news articles and podcasts
- Social media in all its various forms and communications groupings (e.g., Facebook, Twitter, and others)
- The "Cloud" as made available by various search engines
- Apps for downloading
- Commercials and ads in various media
- So called "alternative" sites (highly variable but growing in number)
- Family members, friends, friends of friends, rumors, vague theories, gossip
*It is an open question as to whether the RCT will remain the gold standard or be replaced by crowd-sourcing of data
As one reviews the vast and growing array of available information, it is clear that the potential is great for decisions in medicine and conclusions in science to become increasingly made with tools that bypass the traditional standards of the profession.
KNOWLEDGE AND DECISIONMAKING
Knowledge empowerment in and of itself creates its own problems and issues. As Tversky and Kahneman demonstrated in their groundbreaking work, humans do not always make rational decisions, and these "irrational" decisions may even be predicted3. For example, humans have a built-in cognitive bias, known as the framing effect, in which they react to a particular choice offered in different ways. A surgeon might tell a patient that "this operation has a 90 percent chance of success," or, alternatively, "this operation has a 10 percent chance of a bad outcome." People react differently to data depending on how risk-adverse they are and how their perceived positive and negative outcomes are weighted in their often irrational decisionmaking.
Richard Thaler, the 2017 recipient of the Nobel Prize in economics, demonstrated throughout his career how humans are affected by emotion and irrationality. In a study of the NFL draft, for example, Thaler and a colleague found that professional teams place too much value on early picks, in large part because smart scouts delude themselves into thinking that they can forecast the next superstar. "The more information teams acquire about players, the more overconfident they will feel about their ability to make fine distinctions"4.
Since people's choices and decisions are often irrational and sometimes predictably so, as more kinds of information of varying accuracy and relevancy become available, a new and important skill is required of health professionals: the skill of curating this information in an understandable manner that is sensitive to the values of individual patients. Adding to the complexity of this issue is the growing field of precision medicine, in which the number of medical data points per individual will grow exponentially, requiring an entirely new data management infrastructure with artificial intelligence at its core. As noted in a recent NEJM article: "The new tools for tailoring treatment will demand a greater tolerance of uncertainty and greater facility for calculating and interpreting probabilities than we have been used to as physicians and patients…Assessing and acting on these probabilities will require approaches to data presentation, risk quantification, and communication of uncertainty for which we are largely ill equipped and that we already struggle with"5.
[As an aside, I wonder how well we are training our health professions students in the statistical and communications skills necessary to assist patients in making choices according to their values—and how to provide these uniquely human services with empathy and compassion.]
CURATION IS FUNDAMENTAL TO KNOWLEDGE GENERATION
It is my firm belief that academic health centers bear responsibility not just as knowledge generators but also as knowledge curators. While most institutions list the generation of new knowledge as essential to their mission, I have not yet seen a mission list that also includes the curation of this knowledge.
I strongly believe that academic health centers have moral and ethical responsibilities to serve as trusted resources for medical and scientific information. Traditionally, the vehicles to accomplish this have largely been delegated to the peer-review process of respected journals and "blue-ribbon" panels. But, as noted previously, the information age is changing this important dynamic, and, I believe, putting pressure on academic institutions to be far more proactive in their approach to disseminating trusted and factual information, an approach that goes well beyond efforts of institutional branding. I urge academic health centers both individually and collectively to play a proactive role in the curation of medical and scientific information—generating new knowledge is not enough in my estimation.
Academic health centers need to engage in the challenging conversations surrounding their role in the curation of medical and scientific material. This is not an easy conversation because it requires a new approach to how business is conducted, including everything from promotion and tenure decisions to public relations. And, in so doing, comes the most daunting challenge of all: the ability to overcome "the bias of finding difficulty in imagining any thoroughgoing re-engineering of [our] own discipline"6.
I'd like to conclude by returning to Alexander Pope's warning about "a little learning" and drinking from the Pierian spring, which was considered in Greek mythology to be the source of knowledge of art and science. Pope wrote that at the spring "shallow draughts intoxicate the brain/ And drinking largely sobers us again"7.
Perhaps by "drinking largely" we can collectively put our energies to this critical issue of the information age, and, as a result, serve as a bulwark to the diminishment of knowledge, wisdom, and the true meaning of our profession.
1http://www.newn.cam.ac.uk/wp-content/uploads/2017/06/Mary-Osborne-3.pdf. Accessed January 9, 2018.
2https://www.poetsgraves.co.uk/Classic%20Poems/Pope/a_little_learning.htm. Accessed January 9, 2018.
3Tversky A, Kahneman D. The framing of decisions and the psychology of choice. Science 1981:211 (4481): 453-458.
4Massey, C, Thaler RH. Overconfidence vs. market efficiency in the National Football League. http://www.nber.org/papers/w11270 , accessed January 5, 2018
5Hunter DJ. Uncertainty in the era of Precision Medicine. NEJM 2016;375:711-713.
6Susskind R and Susskind D. The Future of the Professions. Oxford University
Press. Teachings and Writings, No. 265: 1950. 2015.
7https://www.poetsgraves.co.uk/Classic%20Poems/Pope/a_little_learning.htm. Accessed January 9, 2018.