Patients are often confused by seemingly conflicting findings of studies, or equally good doctors recommending different treatment plans. How are we to decide? Medical science is a process created by a “reality-based community” to help decide such questions. Science isn’t just hypothesis-testing with empirical observation, although that is a big part of it. It is also the consensus of a community of experts. In 1660, scientists led by Isaac Newton formed The Royal Society as the first institution designed to collect, encourage, and evaluate scientific knowledge. They published the first scientific journal in 1665 (which is still in publication). Were they ever wrong? Often! For example, for 250 years everyone wrongly believed Newton’s theory that gravity was a fundamental force of nature. And that is the point – knowledge is fallible and not subject to the personal authority of any one person. But over time, the arc of the universe of scientific knowledge bends towards truth.
There have been many improvements to the system of medical science since the Scientific Revolution. The first peer-reviewed journal was published in 1731. But peer-review as we now know it didn’t begin until the 1970s. The first randomized clinical trial occurred in 1747 (citrus for scurvy), but the rules for running double-blinded randomized clinical trials, and progressive Phase 1-3 trials weren’t systematized until Austin Bradford Hill and Harry Gold in the post-WWII era. Statistics entered medicine in the 1970s. Systematic reviews began in the late 1970s. Evidence-based medicine, as we know it today, was taught in medical schools since the 1980s.
Jonathan Rauch in “The Constitution of Knowledge: A Defense of Truth” describes knowledge as a funnel. At the top are all the guesses, the hypotheses, that drive scientific investigation. This would include (in order of increasing reliability) much of what is posted on any patient health forum every day: anecdotal “evidence” from patients; YouTube videos posted by Snuffy Myers, Mark Scholz, etc.; lab studies (mouse or test-tube); observational/epidemiological studies of patients; retrospective case-controlled studies, and systematic reviews/meta-analyses of them; cohort studies (people followed from before disease occurrence; e.g., Health Professionals Follow-Up Study, Mendelian Randomization Study). All of them are just hypothesis-generating. Most hypotheses are, and should be, wrong. Science depends on evaluating lots of hypotheses. There is no shame in guessing wrong; the only problems are when guessing stops and when one confuses a guess for a fact.
Large, well-done, and confirmed randomized clinical trials are at the bottom of the funnel; they are not just hypothesis-generating, they constitute truth in medical science. These categories were universally agreed upon after looking at which kinds of studies are likely to have conflicting results, and which almost never have conflicting results. All scientists believe in these categories; “pseudoscience” occurs when people claim to be doing science but ignore these categories. Here’s a fuller description:
Some institutions regularly GRADE prostate cancer research (NCCN, AUA, ASTRO, ASCO, SUO, EAU, CUA, PCF, and others). The institutional opinions (and not anyone’s personal opinion) are the standard-of-care. Until disproved, they constitute current medical truth. While even the best research doesn’t predict for the individual, one is foolish to ignore our best estimate.There is no science without consensus by experts - science is a social construct. One can argue that there are and always have been objective truths, but we can only know what is in some way perceivable by humans. Did the Earth always revolve around the sun? Of course. But it did not enter the realm of science until Copernicus hypothesized it (1543), and Galileo (1609), Tycho Brahe (1573), Johannes Kepler (1609), and Isaac Newton (1687) proved it and showed how. That’s when astronomy became a science. There is no science without hypothesis-testing and empirical observers.
What can be done to restore faith in institutional truth? Rauch sees hope in the measures Facebook took after it came to light that bad actors from Russia manipulated Facebook’s algorithms to change what was seen by Facebook members. Facebook changed its algorithms and created software to eliminate bots. They also labeled and demoted content of dubious veracity. They established an independent oversight board with transparent rules. It reports to and is financed by independent trustees, who can remove its members if they act in bad faith. The board’s decisions are binding on Facebook and anyone who uses Facebook. Its decisions are published. It acts much like an independent court. The problem for a patient health forum like HealthUnlocked is that unless the oversight body is a panel of doctors, they cannot privilege the content of one post over another without risking lawsuits.
The most any patient forum can do is establish rules for civil discourse. I would suggest the following rules and guidelines for anyone posting in a patient forum:
(1) No ad hominem remarks. Ad hominems are remarks that insult the person. “You’re wrong about that and here’s why…” is entirely appropriate. “Jane, you ignorant slut!” is entirely inappropriate. Responses must speak to content, not the supposed intentions of the poster. If you don’t have anything good to say about a person, say nothing. This should eliminate trolling. Trolls thrive on attention and virtue-signaling, so don’t feed the trolls by responding in kind. Alert a moderator immediately. If you feel you have to make personal remarks, do it in private mail.
(2) Members cannot post dangerous or illegal content (e.g., a recipe for a known toxic substance or instructions on how to obtain it). They may post unproven or experimental therapies, and especially their own experience with them. Members are encouraged to identify experimental therapies as experimental. Hypotheses are entirely appropriate and encouraged.
(3) Avoid strawman arguments. Strawman arguments are ones that replace what the poster is actually saying with a false one which is then refuted. If you are starting a reply with the words “"So what you're saying is ... ?" or “Then you must also believe that…” you are probably setting up a strawman. The opposite is a steelman argument, where you restate what the poster said in the strongest form. It shows you are listening and want to resolve the issue.
(4) Avoid sarcasm. Sarcasm doesn’t work on the Internet. It usually only works if one can see your facial expressions and hear it in your voice. There are no sarcasm emojis, and the original poster will probably believe you meant it seriously. Making fun of a person is just a form of ad hominem. Humor is fine, but not as a rhetorical technique.
(5) Be aware that consensus is rare. Patients may get a lot of conflicting advice or anecdotes, and that’s okay. Discuss with a doctor you trust.
(6) Don’t take it personally if someone disagrees with you. Consider the issue as dispassionately as you can. It’s not necessary to reach agreement, just to flesh out the issue from all sides.
(7) Caveat emptor! No one on a patient forum is a doctor, and no one’s advice or personal experience should be taken as definitive. Anecdotes are not evidence. Check everything with your doctor. It is entirely appropriate to ask for source material for advice that goes beyond the standard-of-care, and to discuss those sources with your doctor. But remember that doctors may have little patience for sources that do not come from peer-reviewed journals or are low-level or low-quality evidence (see above).