e-Patient Dave tells us to “Get Bothered!”

As to be expected, ePatient Dave did a fantastic job as the keynote speaker.
[Some background info – the blog post that was highlighted in the Boston Globe and pushed him onto the national stage.]
These are the main points I took away from his presentation:

  • MLA and librarians need to do a better job of marketing/ getting our names out there. e-Patient Dave said we are not well known outside the library community.
  • Quoted Susannah Fox (and I am paraphrasing) – patients don’t act alone on information that is found on the internet, they often first go to their doctor.
  • The 2-5 years of lag time from when successful research is finished to when that information is published in a journal is lethal. [I will see if I can get a citation for this information] Also, there are so many journals, so many articles that are published today that it seems unreasonable to think that physicians would see and read everything they should. Clinicians should not be upset if a patient finds something they have not.
  • Add the Retraction Watch blog to your reading list.
  • OpenNotes project: what happens when “patients [are able] to review their visit notes written by their doctors, nurses, or other clinicians”? Results recently published. Patients look at the information provided and are not overwhelmed by it; clinicians aren’t overburdened. Overall, it confirms that giving patients access is beneficial to the patient/clinician relationship.
  • Recommended patients read “How Doctors Think” by Jerome Groopman, MD (I will be putting it on my reading list).
  • It would be beneficial for patients to have access to a “Standards of Care” database – however this doesn’t exist. Is this something medical librarians could assist in creating?
  • Did you know e-Patient Dave rapped at a TED conference and inspired a rock and roll song?
  • It might be more dangerous not to ‘Google’ your condition. A study done over three years on this topic found zero deaths associated with patients ‘Googling’ health information [I will add citation in when ePatient Dave’s slides become available].
  • Patients need “information coaches” to help filter out unreliable information or websites when searching online – that’s where medical librarians come in! What about looking into how medical librarians can play a role in the growing trend of patient-centered medical home programs?
  • And finally, a rallying cry – “Med Libs – Get Bothered”
    e-Patient Dave encouraged every librarian to sign up to help patients/ individuals answer their health questions. Register with Melissa Rethlefsen (mlrethlefsen@gmail.com or @mlrethlefsen) and get bothered!
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    One Response to e-Patient Dave tells us to “Get Bothered!”

    1. Dave deBronkart (@ePatientDave) says:

      Well done! DANG it’s sweet to have notes taken by person who’s COMPETENT ABOUT REFERENCES! 🙂

      Seriously – great set of notes. And it was great to meet YOU!

      And, I’m totally serious about StandardsOfCare.org. I bought that domain so we (somebody!) could put up a site there so people can look up what they should be expecting.

      Those standards do exist somewhere – they must – because articles in places like NEJM cite studies saying the standard of care is only delivered about half the time.

      And yeah, get bothered! One medlib told me after the talk, she has a sign on her counter: “BOTHER ME.” 🙂

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