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

Comments

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 nation.....it 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!.....
Denise Waugh, MD FACEP FAAHPM
Alex Smith said…
Ha! We do aim to change the world.
Dan Matlock said…
Alex,

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…
Alex,
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

Lost in Translation: Google’s Translation of Palliative Care to ‘Do-Nothing Care’

by: Cynthia X. Pan, MD, FACP, AGSF (@Cxpan5X)

My colleagues often ask me: “Why are Chinese patients so resistant to hospice and palliative care?” “Why are they so unrealistic?” “Don’t they understand that death is part of life?” “Is it true that with Chinese patients you cannot discuss advance directives?”

As a Chinese speaking geriatrician and palliative care physician practicing in Flushing, NY, I have cared for countless Chinese patients with serious illnesses or at end of life.  Invariably, when Chinese patients or families see me, they ask me if I speak Chinese. When I reply “I do” in Mandarin, the relief and instant trust I see on their faces make my day meaningful and worthwhile.

At my hospital, the patient population is about 30% Asian, with the majority of these being Chinese. Most of these patients require language interpretation.  It becomes an interesting challenge and opportunity, as we often need to discuss advance directives, goals of care, and end of life care options…

Elderhood: Podcast with Louise Aronson

In this week's podcast we talk with Louise Aronson MD, MFA, Professor of Geriatrics at UCSF about her new book Elderhood, available for purchase now for delivery on the release date June 11th.

We are one of the first to interview Louise, as she has interviews scheduled with other lesser media outlets to follow (CBS This Morning and Fresh Air with Terry...somebody).

This book is tremendously rich, covering a history of aging/geriatrics, Louise's own journey as a geriatrician facing burnout, aging and death of family of Louise's members, insightful stories of patients, and more.

We focus therefore on the 3 main things we think our listeners and readers will be interested in.

First - why the word "Elder" and "Elderhood" when JAGS/AGS and others recently decided that the preferred terminology was "older adult"?

Second - Robert Butler coined the term ageism in 1969 - where do we see ageism in contemporary writing/thinking?  We focus on Louise's…

Psychedelics: Podcast with Ira Byock

In this week's podcast, we talk with Dr. Ira Byock, a leading palliative care physician, author, and public advocate for improving care through the end of life.

Ira Byock wrote a provocative and compelling paper in the Journal of Pain and Symptom Management titled, "Taking Psychedelics Seriously."

In this podcast we challenge Ira Byock about the use of psychedelics for patients with serious and life-limiting illness.   Guest host Josh Biddle (UCSF Palliative care fellow) asks, "Should clinicians who prescribe psychedelics try them first to understand what their patient's are going through?" The answer is "yes" -- read or listen on for more!

While you're reading, I'll just go over and lick this toad.

-@AlexSmithMD





You can also find us on Youtube!



Listen to GeriPal Podcasts on:
iTunes Google Play MusicSoundcloudStitcher
Transcript
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: Alex, I spy someone in our …