Archive for September, 2010

Epatient Experts

September 30th, 2010

Having spent the past week participating in a workshop for FDA patient representatives which included sessions on safety analysis and pharmacokinetics, giving a presentation on ways that e-patients can advance clinical research at the American Academy for the Advancement of Science, and being inspired by the E-Patient Connections conference in Philadelphia, I admit to being a bit tweaked at being told in ENT surgeon, Martin Young’s blog post “Are E-patients Experts in Their Own Diseases?” that I have no expertise to offer.  I agree with the central point, particularly after a long conversation with my physician-husband, that patient bloggers should not make definitive recommendations about individual treatments for individual patients, but would be better off couching their remarks as based on whatever experience they have and instead offering key questions to raise or processing for evaluating options.  However, I’d like to make two points (1) the case for e-patient expertise and (2) why patients turn to e-patient bloggers in the 1st place.

The case for e-patient expertise.

Not all patients who go online are e-patients or purport to be experts in any form or fashion.  They are simply seeking information to help them make sense of some health issue intruding into their everyday lives.  There is a burgeoning cohort of patients, however, who not only manage their own conditions in great detail, but read scientific journals, attend medical conferences, and online and off interact with hundreds if not thousands of patients (and often physicians).  Wego Health does a great job of describing the depth and breadth of experience of this small percentage of health activists.  To dismiss this group as simply being experts on themselves is shortsighted.  They may not have the clinical expertise of a top physician thoughtleader but they have a range of insights and expertise in the disease state, in the field,  and are often more well-rounded and informed than an average MD in one practice setting.   I’d love the opportunity for CPE – continuing patient education – alongside CME.  While the usual patient education brochures are great (I’ve even written some) as patients advance in their sophistication many of us would appreciate a level of education more akin to our physicians but with slightly less jargon and some support on the biostatistics.

Why patients turn to e-patient bloggers in the 1st place

I think we can all agree that the ideal scenario is for patients is to have a relationship with a highly-knowledgeable physician, or team of physicians who work collaboratively, who has the time to respectfully listen to all of our concerns and issues, ask probing questions, conduct comprehensive exams, order the right tests, and feed back the diagnostic information in terms we can understand, in concepts we can buy into, and translate into treatment plans that work with our lifestyles and values. Few patients have that.  Not all of us can have @DrDannySands or @tedeytan as our physicians, unfortunately. Nor does the current healthcare “system” support physicians who would love to practice this way.

Too many patients feel rushed, dismissed, patronized, and confused.  They return home asking themselves, “what did that mean?” and “what do I do next?”  Good luck trying to communicate with your doctor or the doctor’s office by phone or email to get real answers at the time and in the setting where are comfortable and truly prepared to have the discussion.  That’s when the online search begins for clinical definitions, symptoms, treatment options, but more importantly someone to help make sense of it all and help a patient figure out what all this information can mean for them and their lives.  E-patient bloggers and online forums are viewed as credible sources for patients because they are psychologically safe places, patients can control the timing of the interaction, and because the information presented is relevant and personal.  Doctors you created this gap. I’d be happy to lay not my laptop if you would fill it.

Excellent posts on the subect by @RAwarrior

Hospitalization 2000 vs 2010

September 15th, 2010

It had been almost a decade since my last hospitalization. Late last week when I was admitted for a massive GI infection I realized that some things had changed and some things had stayed the same since the last time I had taken up residence in an academic medical center.

The Changes

  • Technology – from my bar coded patient ID bracelet to the handheld scanners the nurses used to log medication administration, the advances in use of technology was noticeable.  Lab results from the emergency department were readily available to my gastroenterologist. Mobile computer documentation stations dotted the hallways.
  • Communication – We never felt we had to chase down information. And I swear there was corporate training in the phrase “you know your body best” for the number of times it was repeated by staff.  Although we waited several hours before an inpatient bed was ready, treatment was started, results were shared as they came in, and we were checked on by volunteers, nurses and medical students between visits from the residents and attendings.
  • Emphasis on patient safety – my room was plastered with fall avoidance advice — “call don’t fall” was my favorite – hand washing stations and reminders abounded, and each medication/intervention was double checked by staff and electronically.
  • Med students – when did they get so young?! 1000 thanks to the student who tipped me off to the fact that the branded form of my immunosuppressant was not on formulary and I might want to bring it from home.
  • Me – the questions that I asked and the authority with which I raised issues have increased tremendously over a decade.   The improved clinical knowledge of my conditions and the health system navigation savvy made me a much more effective advocate for my care.  My comfort level and confidence in my knowledge of myself was an asset to accurate diagnosis and acceleration of treatment decisions. (ok, sometimes I had my physician husband voice my request, but still . . .)

The Same

  • It’s All About the Nurses: Making friends with the nurses is the key to a positive patient experience.  While I’m sure everyone on the floor got excellent care, friendly nurses made sure that my poking and prodding started at 7am vs  5:30am because they knew  I was not an early riser in the best of circumstances and  slipped me a copy of all my blood test results so my husband and I fully prepared with thoughts and questions by the time by doctors came ‘round.
  • Hospital food: Dr. William Osler once said, “let food be thy medicine”. That memo never reached the hospital food service folks.  Having the opportunity to survey both the clear liquid and soft bland solid diets I was astounded by the missed opportunity to support my clinical care through nutrition or even to teach proper eating to patients.
  • Me – I still bring in my own pajamas and robe because I hate hospital gowns.  I still can drive an IV pole like Danica Patrick. And I am still so grateful to be the beneficiary of revolutionary medical care that allows me to be alive and enjoy this rich life God has given me.