Posts Tagged ‘e-patient’

New Year’s Resolutions for E-patients

January 11th, 2012

By this point in January we are all wearing our Fitbits and logging our every mouthful into Lose It!, but beyond our own quantified self, what resolutions have we made to be better e-patient advocates?  I propose and have made the following 3 resolutions and ask that you join with me or share with me your own.

In 2012 I resolve to:

  1. Courageously and persistently share my e-patient advocacy with my own care team and institution to support (i.e. insist upon) their adoption of new technology and the workflow changes necessary to partner with engaged patients.  (The e-patient version of think global, act local.)
  2.  Improve my research literacy (more in next week’s post) – my facility with the terminology, methodologies, and mathematics required to converse with the scientific community and interpret medical information.
  3.   Schedule time to proactively mentor other emerging e-patients (as well as spend time with my e-patient mentors).  Congratulations to all on the Top 10 Healthcare Influencers to Follow List.

Here’s to you being not only more active in 2012, but more actively engaged!

Think of Joining the Society for Participatory Medicine. @S4PM

Great Expectations

January 3rd, 2011

Happy New Year!

Nourished by time, quiet, and a flurry of emails on the new listserv for the Society for Participatory Medicine, the December holiday break allowed me to be thoughtful about everything that transpired in 2010 and what direction I felt called to take in 2011.

Highlights of the year include:

  • @epatientdave embracing me as part of the epatient and participatory medicine movement, especially after we both spoke at the National Library of Medicine conference
  • @reginaholliday opening my mind by so well embodying the concept of bringing all your talents to the table and designing one’s own model advocacy
  • @trishatorrey for mentoring by modeling
  • @tedeytan for giving me the confidence to use my authentic voice
  • @lygeia for sharing the platform (literally and figuratively)
  • @clinovations for including me and @cryerhealth in your brilliant business vision
  • Attending the E-patient Connections Conference was like stepping through the looking glass uniting my virtual and physical worlds. I left forever changed.

The new year is a perfect fulcrum for change.   Two particular changes stand out . . .

1.       I realize that it is impossible and perhaps not as desirable as I had originally thought to distinguish between my DCpatient (personal) and Donna Cryer (professional) personas. Each powers the other.

2.       My expectations of the healthcare system and the care I receive have been elevated. Now knowing what is possible in terms of team collaboration, information sharing, and operational efficiency I am ever more impatient for the reality of my care to rise to that ideal.

So I have great expectations in 2011 for working with all who read this to create the patient and family-centered wellness and healthcare delivery system of our imaginations.

Be well. Be joyful. Be Diligent. Be kind. And Believe.

Love,

DCpatient

Patient ID

October 18th, 2010

Almost everyone is familiar with the paper bracelet that hospitals put on people to mark the change in their status to that of a patient. The bracelet identifies the name, age, admitting physician, and often now includes a barcode with additional data that confirms the medical condition, authorized procedures, and medications. As someone who, if I kept them all, would possess enough hospital patient ID bracelets to make into a garland for a Christmas tree of robust circumference, I can’t wait to gnaw, snip, slip, or cut off that bracelet as soon as I leave the view of the discharge nurse.
I realize that others can not so easily shed their patient identity. Their injuries or disabilities, temporary or permanent, continue to identify them instantly to the world as patients, evoking sympathy, empathy, pity, or simply unwanted attention. I’ve never wanted anyone to pity me, make exceptions, or deny me opportunities that I knew I could manage, simply because of perceived limitations. However, as an adult with a long track record of successfully overcoming the physical and emotional challenges of balancing chronic disease with school, work, life, I’ve started to question why I feel the need to escape or hide from the fact that I live with chronic and sometimes acute health conditions.
Three short vignettes from the past few weeks may help explore this evolution in my patient identification:
1. No blood from my hands
I don’t allow anyone to stick my hands with needles to take blood. I’ve had periods of my life that have necessitated repeated blood draws and IV insertions over the course of days, weeks, or even months. Add a few years on prednisone, a dash of dehydration and I have become what’s called in the trade “a hard stick”. Often the usual spot on the inside of my elbow is uncooperative and the tech, nurse, or phlebotomist starts looking at my hands. Recently in the hospital after explaining for the 3rd time that I don’t allow blood to be taken from my hands, I started to cry. The nurse stopped and gave me the opportunity to explain that my hands are the one unviolated spot on my body after years of medical treatments. They were unscarred. Frankly, I have beautiful hands, manicured hands, long fingers made to play the piano or show off fancy rings. When I left the hospital, I could take off the hospital gown, bracelet, put on long sleeves, and appear again as a “normal” person, a healthy person. I got to be in charge of when I revealed my patient status. If my hands were as bruised, bandaged, or scarred as the rest of me there was no hiding, not even from myself.

2. Donna Cryer – Liver Disease
Picking up my name badge at the registration desk at a workshop for patient representatives for the FDA I was a bit taken aback when I saw that it read Donna Cryer/Liver Disease. I understood the purpose of the identification to help us understand and interact with the other patient reps, but in all the hundreds of events I’ve attended, most on healthcare topics, I’ve never been literally labeled by my disease. Of course in this setting, I expected to be disclosing my conditions early and often, but it was no longer my choice in how I presented myself. Contrast with a visit to my doctor’s new office where the staff mistook me for a drug rep. What greater confirmation of polish and perkiness that that! It might have also spoken to the volume of my medical records I was toting that may have been mistaken for a same case, but I digress . . .

3. DCpatient/Donna Cryer
My business manager made me tweet. Let me explain, I am a lawyer, not only by education or training, but by essential temperament. Social media, self-disclosure, does not come naturally to me. In being pushed to blog, I thought, let me start with Twitter, 140 characters of opinion at a time. Also, rather than Tweet as Donna Cryer, JD, I would create an alterego, DCpatient, my patient identity. This blog quickly followed, but still I had this naïve attitude that I could keep these identities, these worlds, separate. How separate they could ever be since I run a healthcare consulting firm focused on advancing patient issues and perspectives? Still, color me surprised the first time someone recognized me as DCPatient while at an evening event with clients. After the E-Patient Conference in Philadelphia, most everyone was using my “real” name and my “patient” name interchangeably. The firewall was broken.

Yesterday, I redrafted my professional bio to include the words “a liver transplant recipient”. There that designation sits next to my Harvard education and Bar association membership. Wearing my patient identification publicly consistently may take more courage that the daily private struggle of living with my conditions.

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
http://hjluks.posterous.com/healthcare-and-social-media-are-e-patients-cr

http://rawarrior.com/epatients-role-in-healthcare-social-media-do-doctors-hate-blogs/