Skip to main content

Eprognosis gets Half a Million Hits in the First Week

Eprognosis is barely a week old, and we've already had over 500,000 pageviews (150,000 unique visitors).  For perspective, GeriPal is about 3 years old, and in that time we've had 400,000 pageviews.  We've had loads of press, including 6 stories in the New York Times about prognosis and eprognosis (Stories by Paula Span here, here, here, here, and here.  Story by Pauline Chen in today's paper here.  For a more complete list of media stories, see the eprognosis "About" page here.  Unexpectedly, about a quarter of our hits have come from Turkey, due to this news story.)

All this attention prompted my six year old son to say, wistfully, "I remember before daddy was famous" --  as if our lives have changed dramatically, and the paparazzi are chasing us down!

But seriously...what does all this mean?

The central objectives of our scholarly work on this topic were to: (1) promote consideration of prognosis in clinical decision making for older adults - because it leads to better clinical decisions and most older adults want to know; (2) promote patient-physician discussion of prognosis (3) evaluate the quality of prognostic tools for clinicians; and (4) make these tools available to clinicians.

Something happened along the way.  Eprognosis was designed for clinicians, and yet before we launched, we decided to allow the public access to the site.  We've been thoughtfully criticized for this decision.  The matriarch of my family, who is nearly 100 and enrolled in hospice, cautioned (via email!) that "numbers don't tell the whole story."  She and others have expressed concern that clinicians and the public may get the impression from eprognosis that a calculator can somehow solve the complexities of prognosis, and skip over the delicate work of prognosis communication.  See also this thoughtful post from Carol Levine, who wrote:
The primary reason that patients are referred to hospice so late is not that doctors don’t know the patient is dying but that they are reluctant to discuss the option.  For now, my suggestion is that ePrognosis is best used with a warning: “Do not try this at home. If you do and experience severe anxiety or contemplate drastic life changes, consult your physician right away.”
We were deeply ambivalent about the decision to allow non-clinicians access to the site.  On the one hand, we worried that the average lay person doesn't have the medical sophistication to gauge the applicability of an index to their clinical situation, much less correctly input the variables and interpret the statistical results.  On the other hand, culture change around these discussions is not likely to occur if we focus solely on motivating clinicians to talk with patients about prognosis.  We believed that we'd have far greater potential for promoting a national (or international) conversation about this topic if we opened the site to patients and caregivers, encouraging them to discuss the information with their clinician.

What do you think?  Should we have opened eprognosis up to the general public? Should we require clinicians to log-in and provide evidence of their clinical credentials to access the site (if this is possible)?  Or should we push forward, helping lay users access and interpret the information, activating patients and caregivers to have informed discussions with their clinicians?

by: Alex Smith


I applaud you opening eprognosis to the public. To deny the public access would continue the paternalistic stance of medicine that prognosis is a "secret" that clinicians must bear in silence for the good of the patient. I believe the American public will prove they want to know and that will drive clinicians to reexplore the reasons for their timidity. Ideally this would lead to clinician pursuit of greater communication skills through the reading of journal articles and books like Mastering Communication with Seriously Ill Patients.... Perhaps the public will begin to demand POLST programs throughout the could lead to a major attitudinal change in medical care.... You could become Saviour of the Medicare system ... there will be write ins for Smith for president 2016!.....
Alex Smith said…
Ha! We do aim to change the world.
Dan Matlock said…

A few things:

1) It is such a joy to see this having so much success. Seriously, I had a huge smile on my face when I read 500,000 hits. That is just wonderful. I had a similar feeling to that of your 6 yo son..."I knew Alex and Eric when..."

2) Yes, keep it open to patients. Thinking about prognosis is a nice way to confront the death taboos that inhibit good conversations. 500,000 hits is evidence enough that people want this information.

3) I actually like the disclaimer but I would delete the "don't try this at home." Why not try this at home? Just feel free to bring it to your doctor...if your doctor won't talk about it, get a better doctor.

4) The belief that this information will harm patients is a highly testable hypothesis. :) I know of know literature supporting it to this point but no one else has 500,000 potential data points...
Anonymous said…
Let's face it. The information is already available to the public. However, thanks to a model of academic dissemination that is based on 19th century methods of print publication, most of the public have no idea how to access this information. There have been small gains in this regard thanks to portals like Pubmed, although at $30-$60 a pop, most of these tools remain firmly stashed away in the ivory tower of academia.
Julia Addington-Hall said…
Greetings from across the Pond! This is really interesting work, which I haven't seen picked up here yet - but I may just have missed. Prognostication is a big issue in UK palliative and end of life care at present (we use the terms differently -EOL care is the last year or so) - not because of rationing, as some commentators on your site seem to think, but to enable patients and health care professionals to make plans based on what patients' choices. I'll bring it to the attention of our pall care and EOL policy people. Best wishes. Julia Addington-Hall (PS love Geripal - been reading it for ages,)
Alex Smith said…
Thanks Julia! Good to hear from you and glad you're spreading the word. Right on that this whole project is about improving informed decision making. Best, Alex

Popular posts from this blog

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

Language Matters: Podcast with Brian Block and Anna DeForest

One of our first GeriPal posts was titled "Rant on Terminology," by Patrice Villars, NP.  In the spirit of looking back over our first 10 years, here is the opening paragraph to that post:

News Headlines read: Sen. Edward Kennedy loses battle with cancer. Really, he lost? I thought he died from a malignant brain tumor, an “aggressive” brain tumor. The median survival is less than a year for people for his particular tumor. Kennedy was diagnosed in May of 2008. He lived over 15 months after diagnosis. What a loser. He must not have fought hard enough. Huh? I thought he spent most of his life battling for social and health care reform in America. In this week's GeriPal podcast we take a deeper dive into this issue of language and medicine.  We are joined by guests Anna DeForest, MD, MFA, a resident in Neurology at Yale, and Brian Block, MD, a pulmonary critical care fellow at UCSF.  

Anna recently published a paper in the NEJM describing her reaction to hearing terms like, &…

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …