If you've wondered why I've been under the radar lately, look no further than my odyssey of medical maladies; in addition to my ongoing struggle with POTS, this year I've had: a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions. Since I’m a numbers person, I downloaded my claims data from my insurer to get a better idea of how much time I’ve wasted in the healthcare system since January 2014.

Useful Visits

This last year I had 56 outpatient doctor visits, 20 emergency room visits, and spent 54 days inpatient. But how many of these visits were useful? As you can see in the table below, not many.

Total Visits Useful Visits Useful Visits Useless Visits
Outpatient
Cardiology 7 3 43% 57%
Endocrinology 1 1 100% 0%
Gastroenterology 6 2 33% 67%
Hematology 2 1 50% 50%
Neurology 1 0 0% 100%
Ophthalmology 1 1 100% 0%
Pain Specialist 8 3 38% 63%
Primary Care 15 2 13% 87%
Psychology 11 2 18% 82%
Rheumatology 4 0 0% 100%
56 16 29% 71%
Inpatient
Emergency Room 20 9 45% 55%
Hospitalizations 9 8 89% 11%
Hospital Days 54 10 19% 81%
Ambulance 7 3 43% 57%

I used the following definitions of ‘useful’:

  • Outpatient visits were ‘useful’ if it resulted in a change to my treatment or I underwent a test/treatment. Appointments consisting of prescription refills without dose changes, advice I already knew, or second requests for the same thing were counted as useless visits.
  • ER Visits qualified as ‘useful’ if they resulted in a new diagnosis or ended in a necessary hospitalization. Since there's been a bit of twitter back and forth on this point - the reason some ER visits aren't useful (or are even harmful) is usually for one of two reasons: 1. They refuse to manage my pain because I "have pain medications at home" or 2. I have to make multiple visits for the same reason in a short time frame (for my last blood transfusion I went to the ER three times in the same week before they transfused. At the time of the first ER visit I had a HgB of 8.3 that had dropped from 9.3 in two days. They made me wait until it hit 7.1 before transfusing, despite me being symptomatic during the first ER visit and this being the fourth time this year we've done this song and dance routine.). 
  • Hospitalizations were designated as useful if they were unavoidable. One of the hospitalizations for nausea/vomiting may have been unnecessary.
  • Hospital Days included a test or treatment; days where the only treatment was saline and Zofran do not count as useful.

Time Wasted

Here I looked at how long it takes to schedule an appointment, wait in the waiting room, fill out paperwork, wait for nursing, discuss the case with the student/intern, and consult with the physician responsible for my care by specialty.

Average Visit Breakdown (In Minutes)
Outpatient Sched Wait Rm Pprwk RN Student Consult Visit Total
Cardiology 15 50 10 10 5 10 100
Endocrinology 0 15 5 15 0 5 40
Gastroenterology 15 120 5 10 5 5 160
Hematology 120 15 10 10 5 10 170
Neurology 30 10 0 0 0 5 45
Ophthalmology 0 20 10 0 0 30 60
Pain Specialist 15 50 5 10 15 2 97
Primary Care 20 30 10 10 5 15 90
Psychology 15 60 5 0 5 45 130
Rheumatology 20 120 10 10 5 5 170
Inpatient Wait Rm Pprwk Waiting RN Student Consult Visit Total
Emergency Room 180 15 240 15 15 10 475
Hospital Days 30 15 1320 60 30 5 1460
Ambulance 15 15 30 0 0 0 60

Some Observations:

  • The fastest experience was with a neurologist who had me in and out of their office in 15 minutes flat; unfortunately he just told me to come back in six months to see if I spontaneously got better (after waiting six months for an appointment).
  • The most egregious offenders here are GI, Psychology, and Rheumatology, all of which have, on average, three hour wait times as they routinely forget I’m physically in the office waiting for them and/or cancel my appointment without calling me.
  • My current pain specialist sees me, on average, for 2 minutes per visit, having fourth year medical students examine me and practice giving an (unnecessary) exam. I have to see her each month to get my prescription due to policies and legal issues with prescribing. In calculating usefulness I included student interview time as useful for pain as it's being used to supplement physician time.   
  • On average I wait 20 hours to get a bed in the hospital. My last two admissions were doozies – last time I spent 48 hours in an on-call room, the time before that I spent 27 hours in a hallway (with a pulmonary embolism). I didn’t sleep the entire time I was in these makeshift environments which is obviously detrimental to the healing process.

Value Quotient

In Lean there’s the concept of Value Added Time (things the customer will pay for) and Non-Value Added Time (things not of value to the customer). Since I’m the customer in this situation, I get to define what’s valuable to me and what’s not. Here I defined Value Added time as:

  • Outpatient Care: Total consult time plus one episode of paperwork and one episode of nursing per specialty. At least once a year I need to update my paperwork, but when there hasn't been a change (and there hasn't been since January) refilling out the forms is unnecessary. Same thing when it comes to nursing/medical assistants - last week I saw 3 outpatient specialists on the same day, in the same system, using the same EHR. All 3 still insisted on taking my height, weight, blood pressure, and temperature. All 3 readings were essentially the same. 
  • Inpatient Care: Total consult time and nursing time. Please remember it's an average - when a 2 hour procedure is preceded by 3 days of nothingness, on average that's only half an hour of value per day. 

The Value Quotient is value added time divided by total time. Here I did two calculations – one which calculated the value per visit, and one which discounted the Value Quotient per visit by the percentage of visits which were useful.

Value Breakdown

TotalTime(Hours) Non-ValueAddedTime(Hours) ValueAddedTime(Hours) ValueQuotient(Total) ValueQuotient(Discounted)
Outpatient
Cardiology 11.67 10.17 1.50 12.86% 5.51%
Endocrinology 0.67 0.25 0.42 62.50% 62.50%
Gastroenterology 16.00 15.25 0.75 4.69% 1.56%
Hematology 5.67 5.00 0.67 11.76% 11.76%
Neurology 0.75 0.67 0.08 11.11% 0.00%
Ophthalmology 1.00 0.33 0.67 66.67% 66.67%
Pain Specialist 12.93 12.42 0.52 3.99% 1.50%
Primary Care 22.50 18.42 4.08 18.15% 2.42%
Psychology 23.83 15.50 8.33 34.97% 6.36%
Rheumatology 11.33 10.67 0.67 5.88% 0.00%
106.35 88.67 17.68 16.63% 4.75%
Inpatient
Emergency Room 158.33 154.75 3.58 2.26% 1.02%
Hospital Days 1296.00 1290.50 5.50 0.42% 0.08%
Ambulance 7.00 6.50 0.50 7.14% 3.06%
Total (Minutes) 1567.68 1540.42 27.27 1.74%
Total (Days) 65.32 64.18 1.13

 

Some Observations:

  • The only reason Primary Care received any value attribution is because I need someone to renew prescriptions for anti-nausea drugs, letters for FMLA, and send records to hematology. I feel bad that their years of medical school and residency are being wasted on purely administrative procedures.
  • Some of these specialties were overly impacted by the amount of time it takes to schedule visits. For instance, hematology took six months and over four hours of my life to schedule one visit; however, the time spent with the doctor herself is quite valuable. Conversely, Ophthalmology and Endocrinology were scheduled using a third party platform so the scheduling process was very smooth, but using the third party platform led to billing issues. If I accounted for the time-value of money, the numbers would shift a bit.
  • Since anxiety and sleeplessness make my conditions worse, you could argue that time spent stressing over potential central line infections from sloppy nursing, negotiating with physicians to receive humane treatment, being woken up by medical students for their educational benefit, developing a kidney infection due to inattention and disregard, and it taking multiple ER visits for an issue to be treated should count as iatrogenic harms, but let’s keep the math simple here.

Recap

This past year I’ve had 20 ER visits leading to 9 hospitalizations spanning 54 days. I haven’t had a single vacation day that hasn’t been spent in or at the hospital this year. Looking at a recent HR statement, I’ve taken ten weeks off related to my medical conditions, most of which was unpaid. If I don’t take the whole day off for an appointment, I have to get to work early or stay late. Additionally, you only get so much FMLA time and if I'm wasting it being stressed out by nurses and back-channeling doctors to coordinate care, I'm not using the time to heal.

I understand that my case is complicated and it takes a significant amount of time to coordinate. However, there's no reason I need to physically be in the physician's office or at the hospital while they make phone calls on my behalf. I’m a social person and every second I spend in the hospital or ill is another second I’m missing out on friends and family, that I'm missing out on life. Speaking of friends, they've been immensely supportive of my care. Since I've had so many bad ER experiences I now refuse to go without a companion - ie it's not just wasting my time, it's wasting #TeamJess' time as well.

So yes, I owe the medical system my life for giving me blood when my hemoglobin drops deathly low. But there's no reason a 4 hour transfusion required 84 hours of negotiation and frustration. There's no reason that only 4.75% of outpatient visits and .08% of my hospitalizations are spent actively treating my condition. There's no reason that I spent two solid months (1540 hours, 64.2 days) of this year waiting instead of healing.

So, please, stop wasting my time. Stop wasting my life.

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Meme'd photo of my cat Oliver by Dr. Hayman Buwan, @CurryJazz. Apparently the words on the clock are Italian and say "Punctuality and Courtesy is of the King"

TeamJessBanner

 

In putting together my story to become a member of The Walking Gallery, I started thinking about all the people who have helped me out since I got sick. Maybe they helped me out physically, maybe emotionally. All I know is that all of these people were there for me. Most of them were there for me multiple times. Some stayed up with me all night. Some pushed me to get help. Some listened to me complain, cry, and laugh. And I know that without this cast, I wouldn't be who I am today.

So, everyone, thanks -- you prove that the heart of life is good.

 

 

The Home Fries

 

The people who understand where I come from. It’d been years, yet when I got sick, they called, sent flowers, and visited. They don’t pick me up off the ground, but they’re always only a phone call away.

My Girls1. The Sister, 2. The Mother

My Boys3. The Father 4. The Brother 5. Becky, 6. Bissie, 7. Jessie, 8. Ryan

 

The Cal Kids

suzie

9. Suzie

From the beginning of college through the present, no matter what the issue is, they listen to me, laugh with me, and pick me up when I fall.

viv matt

10. Stephanie, 11. Vivian, 12. Matt

Or they send their parents, or their boyfriend, or their boyfriend’s friend. Basically they’re hyphy rockstars who stood by me before I got sick, stood by me when I got sick, and stand by me to this day.

Sonja Nayeli13. Sonja (14. Tal), 15. Nayeli

Amanda

16. Amanda

havah steph

17. Havah (18. Jason), 19. Stephanie,

AGO ADX20. Stephanie, 21. Carrie, 22. Laura, 23. Arri, 24. Susan, 25. Laurelei, 26. Erin, 27. Carissa, 28. Amanda, 29, Carla, 30. Sarah, 31. Andrea, 32. Emma, 33. Peter, 34. Dave, 35. Jared, 36. Mark, 37. Bryson

At Cal, it’s hard to have real relationships with your professors, your GSIs, your classmates. You’re one in 500 students. But when you fall over, these barriers somehow disappear. My bioethics professor offered to be my medical advocate and call my parents. My social psych professor took me to the student health center in a police car. My GSIs took me home and didn’t freak out too much when I got pulled out of their classes by EMTs. My classmates told me their personal stories, walked me home, and ran the interference required to keep me out of the hospital. Then I worked at a homeless resource center, and, of course, I had my own contingent of the tribe.

gorcey

38. Max, 39. Lev, 40. Ryan, 41. Ben, 42. Joe, 43. Andi, 44. Neil, 45. Steven, 46. Eric, 47. Emilie, 48. Chad, 49. David, 50. David, 51. Diva, 52. Robb, 53. Dylan, 54. Olivia, 55. Kevin, 56. Kristen

 

The Georgetown Crew

I know I owe my masters degree to my cohort at GU - they ensured that I graduated with some cognitive surplus intact. They stole a wheelchair (we returned it... eventually...), drove me home, tucked me into bed, picked me up in weird places, took me to the hospital and waited for hours, staged an intervention, rescued me from water, were my chauffeurs, and caught me when I fell.

Dantana

57. Karen, 58. Veronica, 59. Erin, 60. Dantana, 61. Zach, 62. Veronica, 63. Ashley, 64. Matt, 65. Chris, 66. Matt, 67. Anthony, 68. Betelle, 69. Elliott, 70. Hooman, 71. Jennifer, 72. Kyle, 73. Laura, 74. Maria, 75. Sarah, 76. Stephanie, 77. Charlotte, 78. Haymi, 79. Heather, 80. James, 81. Alice, 82. Alex, 83. Dr. C, 84. Dr. H, 85. Amy, 86. Miriam, 87. Michelle

Phil

88. Phil

ekat
89. Ekat

 

The Feds

For a crew that wears suits all the time, they’re surprisingly protective. From the ONC to HRSA to the FDA, these people were amazing.

90. Wil, 91. Farzad, 92. Lanre, 93. Sachin, 94. Andrea, 95. Sameer, 96. Yael, 97. Marty, 98. Miryam, 99. Robyn, 100. Ian, 101. Mike, 102. Rose, 103. Mary Beth, 104. Georgie, 105. Lori, 106. Jim, 107. Jill, 108. James, 109. Adam, 110. Damon, 111. Aman, 112. Alina, 113. Alon, 114. Mary, 115. Doris, 116. Amy, 117. Gary, 118. Sasha

hhs

High Fives

High Fives

119. Alicia

randi120. Randi

The Law Kids

I was scared that when Amanda left and I wasn’t with the GU kids everyday I’d be alone. That I wouldn't have a person anymore. Nothing could be further from the truth. These people adopted me into their family and are there for me as if I had always been a member of the crowd. Even though I’m not an attorney.

121. Brad, 122. Marie, 123. Gabe, 124. Shaun, 125. Michelle, 126. Sam, 127. Natalie, 128. Laura, 129. Navin, 130. Kathleen

OLYMPUS DIGITAL CAMERA

 

 

The Walking Gallery (and Twitterati)

ted regina131. Regina, 132. Ted,
These people gave me a voice to speak out about being a patient. They helped me discover telling your story is one of the most empowering things you can do.

Whitney133. Whitney (and 134. Jake)

Rebecca135. Rebecca
gallery 136. Nikolai, 137. Wen, 138. Tiffany 139. Lisa, 140. Matthew, 141. Fred, 142. Alan, 143. Gregg, 144. Leonard, 145. Alan, 146. Amy, 147. Brian, 148. Diana, 149. Kait, 150. Greg, 151. Christine

 

The Entrepreneurs

And we have all the technophiles.Some are health, some are not. All want to make the world a better place.

152. Katie, 153. Dhruva, 154. Dave, 155. Marco, 156. Kyle,157. Adam, 158. Henry, 159. Jamie, 160. Michael, 161. Andre, 162. Polina, 163. Anish, 164. Adam, 165. Lygeia, 166. Raph,

Marvin167. Stephanie, 168. Marvin

 

The Alturists

And last, but certainly not least, we have all the people who took me in and really had no idea what they were getting into. I can never thank you enough for all the love and care you all have shown me.

Donna and Dennis

 

169. Donna, 170. Dennis

 Konstantin171. Konstantin

 Leonard172. Leonard
Kelli171. Kelli

11:00PM: Pass out. Smack head.
11:25PM: Pass out. Miss head.
12:00AM: Pass out. Get caught. (Rinse. Repeat. 5x. 12:30-1AM).
01:00AM: Get picked up and carried to bed. Have friend leave.
01:30AM: Have friends come back. And attempt to convince you to go to the hospital.
01:45AM: Call your friends in CA to convince your friends in DC that you don't have to go to the hospital.
02:00AM: Sleep.
04:00AM: Wake up. Go to bathroom. Pass out.
05:00AM-11:30AM: Exist in Twilight.
03:30PM: Have friend come back.
03:35PM: Have friend call his doctor friend in a thinly veiled attempt at convincing you to go to the hospital.
03:40PM: Know what he's doing and go to the hospital even though you don't think it's necessary.
04:00PM: Arrive at hospital. Have no idea what happens to the car.
04:03PM: Get escorted back to room.
04:05PM: Get hooked up to every machine.
04:10PM: Try to make deal that involves an abortion to avoid peeing in a bedpan.
04:12PM: Fail.
04:15PM: Get stuck.
04:16PM: Get stuck. Have nurse give up.
04:30PM: Get stuck.
04:32PM: Get stuck. IV Success!
05:00PM: Make jokes about tweeting at Todd Park.
07:00PM: Almost get a CT scan. Almost pass out instead.
07:45PM: Lose talking privileges in re: work.
07:55PM: Lose talking privileges in re: everything.
08:00PM: Get CT scan.
08:10PM: Try to make deal to leave hospital.
08:12PM: Fail.
08:15PM: Sit up to breathe. Get dizzy and nauseous. Almost pass out. Get caught. Be laid down.(Rinse. Repeat til 11PM).
11:00PM: Freak out.
11:02PM: Get told you’re being admitted.
11:03PM: Get morphine.
11:15PM: Agree to license the 3 M’s to a nonprofit.
11:16PM: Stereotypically outsource thinking to Indian friend.
11:17PM: Finally get that Morphine trumps Mind and Matter.
11:30PM: Get fed pringles and Gatorade. Think it’s the best thing ever.
11:45PM: Get moved to hall.
12:00AM: Fall out of wheelchair. Have friend pick you up put back into bed.
12:15AM: Get transported upstairs.
12:30AM: Get put into bed.
12:40AM: Have friends leave.
12:45AM: Get new telemetry devices and percocet.
02:00AM: Get morphine.
02:30AM: Fall asleep.
03:00AM: Get woken up by IV beeping.
03:15AM: Have nurse turn off IV noise.
03:20AM: Get woken up by IV beeping.
03:25AM: Hit IV buttons til they stop beeping.
04:00AM: IV starts beeping. Go into hallway and freak out over beeping. Almost pass out.
05:00AM: Get Ultram.
05:30AM: Sleep.
06:00AM: Get woken up for blood pressure.
06:15AM: Sleep.
07:00AM: Get woken up for blood draw.
07:15AM: Sleep.
08:00AM: Get woken up to talk to med student.
08:15AM: Sleep.
09:00AM: Get woken up by roommate’s doctors.
09:15AM: Sleep.
11:00AM: Get woken up by roommate’s visitors.
11:30AM: Have Drs and 15 med students round. Get told there’s nothing they can do.
12:00PM: Call nurse and go to bathroom.
12:05PM: Pass out. Not get caught by LVN you called. Hit head.
12:10PM: Get visited by nurse manager.
12:15PM: Puke. Start Shaking.
12:30PM: Have doctor come visit and tell nurse to give Zofran.
12:32PM: Have nurse refuse to give medication until the doctor physically writes it.
12:33PM: Have doctor promise to write script.
12:35PM: Get Zofran.
01:00PM: Get more Percocet.
02:00PM: Fall asleep.
02:30PM: Wake up because IV has blown and is leaking all over the place. Hit call button.
02:45PM: Get tired of waiting for nurse. Stop IV flow yourself.
02:50PM: Have nurse get mad because you made her replace her gloves before she replaced your IV.
02:55PM: Get stuck.
03:00PM: Get stuck. Have nurse give up and refuse to pull out infiltrated IV.
03:30PM: Have tech come to replace IV.
03:33PM: Get stuck.
03:35PM: Get stuck. It works.
04:30PM: Have nurse come back and reconnect IV. Remind them to pull out leaking IV.
05:00PM: Get dinner.
05:30PM: Puke.
05:40PM: Ask for more Meds.
06:45PM: Get more meds.
07:30PM: Exist in twilight
08:30PM: Have friend show up with Happy Meal. <3.
08:45PM: Get discharged.
09:15PM: Pass Out.
09:20PM: Get tucked into your own bed.
09:30PM: Fall Asleep. Stay Asleep. Bliss.

Alice is the most wonderful mentee ever.

Alice is the most wonderful mentee ever.

“Are your eyes closed?”
“No”
“Yes they are. Jess, why do you lie? It scares me when you lie.”
…“Wait, what?”
“You’re going to fall.”

And, like clockwork, I fall, semiconscious to the sidewalk on the corner of Pennsylvania and Constitution.

Somewhere above me someone is concerned. “Is she ok?” “Yes” “No, really, is she ok?” “Yes, she has a heart problem.” “Really? Is she ok?” “Yes, I’ve got this.” “You’re sure?” “I’m sure.” Yes, lady, he has this. He always has it. No matter how embarrassed he is. No matter how inconvenienced he is. He has this.

So, what’s wrong with me? Postural Orthostatic Tachycardia Syndrome. POTS. What’s that mean? It means that sometimes when I stand, my heart rate doubles, my blood pressure drops, and I pass out.

Apparently most people grow out of this. But I’m not most people. I’m 25. I’ve had POTS since, if I’m honest, I was about 9. When I finally got it diagnosed at 21, my condition became legitimate. I’ve seen the statistics; the odds that this goes away after fifteen years are almost nonexistent. I won’t die, but sometimes I’ll want to. As my cardiologist put it, “I’m [his] problem.” I’m the one he can’t fix. But that makes sense. I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding.

During my last “bad” episode, my friend called to check up on me: “Jess, if they make you go to the hospital I’m not going to fight them. Plus, isn’t that what you do?” No, that isn’t what I do. Yes, I have a degree in Health Systems Administration. Yes, I’m an “expert” on Health Information Technology. But that doesn’t change the fact that I’m a horrible patient. That I carry my medical records around with me in a hot pink binder. That I hate hospitals.

And I always have. If I had my way, I’d keep everyone out of them. It’s why I “do” health IT. See, I’ve been in lots of hospitals - from community hospitals to major academic medical centers. They're filled with well intentioned, highly trained, people. Unfortunately the mechanisms these care facilities have put in place don't actually connect the people within, let alone between, instances of care.

I used to think I’d trade anything for perfect health. Now, I don’t know if I would. See, I’m happy. I have people. I have a future. And I know that my life has been influenced by my sickness. Without it, I wouldn’t understand. I wouldn’t understand powerlessness. I wouldn’t understand frustration. I wouldn’t understand that the system is broken.

How broken?  During one stay, despite my credentials, I ended up semiconscious at the bottom of a flight of stairs, in tears, begging to go home. See, in the moments I’m a patient, I can’t manage my life. And, despite their credentials (on this visit: a MD/MBA, a MPH, and three MHSAs), my friends can’t manage it for me. Can you imagine someone without this support system navigating the bureaucracy that is healthcare? I don't know how they do it.

Luckily this is only one side of my coin— I’m healthy enough to have a day job advising the people that chart the course of American health policy. The philosopher Herodotus got it right: “the greater the man, the greater the misfortune,” or, as our friend Peter Parker put it “with great power comes great responsibility.” I know that the weaker I get, the stronger I become. The weaker I get, the more I understand that my care continuum isn't the only one with flaws. The weaker I get, the more I understand that together, we can change our health system. That the whole is greater than the sum of its parts.

Back under the glow of the US Capitol, I hear my friend:

“Jess, you’re broken. But I’m broken too. We’re all broken.”
“You think that together we make a whole person?”
“Yeah, Jess, together we’re a whole person.”

And with that, he picks me up. And carries me home.

http://i2.wp.com/mw2.google.com/mw-panoramio/photos/medium/56925708.jpg?w=630

This is the story behind my Walking Gallery Jacket: "Is She Alright"

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2009 Graduate Scholar (Second Runner Up)

In 2004, President George W. Bush set a goal that by 2014 every American should have an electronic health record (EHR). October 1st 2010 marked the government’s foray into the 2011 Fiscal Year -- it is now T-3 years and counting. I have no doubt that every American will have an electronic health record by 2014. And if they don’t, well, they can have one of mine.

As a young person with a medical issue, I have access to upwards of 15 EHRs and their requisite patient portal access. Despite the prevalence of EHRs, I doubt the quality of my care is significantly better. See, my data is stuck in EHRs don’t talk to each other. A few months ago I found myself trying to get care at a well-respected, technologically savvy, teaching hospital. Having not been there before, I attempted to have my medical records sent from another electronically enabled medical center. This task proved impossible and I had to have my friends bring me my hot-pink binder of medical records, which, unfortunately, did not reflect my most recent notes. See, in schlepping my medical records from hospital-to-physician-to-hospital, I had missed a visit. Indeed, it is a pain to ensure that the records are complete, even though many of them originated in EHRs. After all, a paper printout of an EHR is still just paper printout. The point of this anecdote is that if I, a Masters student in Health Systems Administration, cannot figure out the system, neither can your grandmother. This process is not safe or efficient and frustrates providers and patients alike.

2009 estimates show good progress toward President Bush’s goal: 46% of hospitals and 44% of ambulatory providers indicated that they have an EHR. Unfortunately, like my story showed, “adoption” is not indicative of meaningful adoption. When these rates are examined again, fully functional, communicating, EHR systems account for only 1.5% of adoption in hospitals and 6% of adoption in ambulatory providers. I don’t deny that full, meaningful, adoption is difficult -- startup costs are immense, workflow issues prohibitive, the Return on Investment questionable. Anyway the picture is painted, adopting a fully functional EHR is seemingly impossible for all but the largest medical centers. Fortunately, President Obama’s thrown a curve ball with the American Reinvestment and Recovery Act of 2009. Through the Title VII: Health Information Technology for Economic and Clinical Health Act, ARRA promotes the adoption of Electronic Health Records, promising upwards of 20 Billion dollars in incentive payments for the Meaningful Use of EHRs as defined by the Office of the National Coordinator (ONC). Furthermore, it allocates funds to provide assistance in vetting EHR software choices, training workforces, and creating Health IT test-beds.

But these programs are just tools. Indeed, the first step to creating a continuously learning high performing health IT system is to take advantage of these tools and incentives to lay a solid EHR foundation which exchange can be built from. Second, it is time to spend energy not only on adopting EHRs but ensuring that we utilize them in patient centric ways. If patients aren’t engaged by their health information, what is the point? Sure, the physician has a complete record of care and is held responsible by mandatory quality reporting. Sure, with clinical decision support tools and ePrescribing, drug safety increases. But how does a patient know that these functionalities exist, let alone, that they are benefitting their health? If a provider cannot access an aggregated EHR at the point of care, again, what is the point?

Great strides have been made in integrating communities of care with electronic health information. Through the Patient Protection and Affordable Care Act, the Center for Medicare and Medicaid Innovation (CMMI) has been tasked with defining and creating Accountable Care Organizations. These organizations will likely be based off of the Geisinger/Kaiser model and pay based on a capitated system. But what is more important than their payment structure and commitment to provide comprehensive care is their continual commitment to innovation.
This commitment to innovation is exhibited by CMMI’s reception to mobile health technologies. The ability of EHRs to interface with remote medical devices will be groundbreaking. Take, for instance, a diabetic. Currently, a diabetic takes a blood glucose reading and records it by hand. These logs are often illegible and physicians do not have the time to page through them to identify trends. Currently the technology exists to link glucose meter readings to patient records electronically. This link ensures that readings are recorded correctly and allows for physicians to passively monitor a patient’s blood glucose, enabling them to take immediate action when levels fall outside a predetermined range. Furthermore, the system can remind a patient to check their blood sugar and allows the patient to track their progress via an online portal. This application is a prime example of how technology enables effortless patient communication and provider accountability. Pilot studies show that this kind of application is effective; indeed, it is correlated to a reduction of 5 points in blood glucose readings and a 1% reduction in HbA1c readings over a three-month period.

But this level of innovation is not possible so long as we believe that EHRs are simply static repositories of information. Until there is an open flow of information between providers and patients, this level of innovation will remain but a dream. Indeed, patients and providers alike must demand this kind of functionality be reimbursed by payors by proving the tool’s value through consistent utilization and better outcomes. I believe that we can move beyond this dysfunctional Health IT system and into one that is truly patient centered. Have I been drinking the proverbial kool-aid? Probably. But if that’s what gets me to think outside of the “EHR as savior” box and vocalize the need for the engaged exchange of medical information across the continuum of care, pour me another glass. Cheers.

 

 

Note: With this essay I won the distinction of being the 2011 NCHE Graduate Scholar.

Before I went to the reception I sent this picture to a friend telling them that I couldn't wear the "hooker heels" UNLESS I won. If you win you get to wear whatever non-totally-business appropriate shoes you want!

Hooker Shoes

This is a covert shot I took as soon as  I won and sent to my Grandma. Grandmas like images like that. Covert Shot

 

 

Works Cited:
“About ONC.” http://healthit.hhs.gov/portal/server.pt?open=512&objID=1200&mode=2.
Medical Records Privacy Rights. http://www.privacyrights.org/fs/fs8-med.htm
Beacon Partners. Healthcare Leaders Speak up on Where THey are in the EHR Adoption Process. http://www.beaconpartners.com/ehradoption/BeaconPartners_EHR_AdoptionStudy.pdf
NAMCS Data. Accessed May 2010. http://www.cdc.gov/nchs/data/hestat/emr_ehr/emr_ehr.pdf
Jha et al., 2009, NEJM. Accessed May 2010.
NAMCS Data. Accessed May 2010. http://www.cdc.gov/nchs/data/hestat/emr_ehr/emr_ehr.pdf
Yu, Wil. Ambulatory Adoption. July 2010. Office of the National Coordinator for Health Information Technology.
Simon et. Al.” Correlates of Electronic Health Record Adoption in Office Practices: A Statewide Survey.” JAMA. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2215070/
Electronic Health Records and Meaningful Use. http://healthit.hhs.gov/portal/server.pt?open=512&objID=2996&mode=2
HIT Regional Extension Centers. http://www.regionalextensioncenters.com/
Community College Consortia to Educate Health Information Technology Professionals in Health Care Program. http://healthit.hhs.gov/portal/server.pt?open=512&objID=1804&parentname=CommunityPage&parentid=14&mode=2&in_hi_userid=11673&cached=true
Beacon Community Program. http://healthit.hhs.gov/portal/server.pt?open=512&objID=1805&parentname=CommunityPage&parentid=2&mode=2&cached=true
Fact Sheet: Medicare Meaningful Use http://www.cms.gov/apps/media/press/factsheet.asp?Counter=3792&intNumPerPage=10&checkDate=&checkKey=&srchType=1&numDays=3500&srchOpt=0&srchData=&keywordType=All&chkNewsType=6&intPage=&showAll=&pYear=&year=&desc=&cboOrder=date
Hunt et al. JAMA. Effects of Computer-Based Clinical Decision Support Systems on Physician Performance and Patient Outcomes. http://jama.ama-assn.org/cgi/content/abstract/280/15/1339
Lee et. Al. Creating Accountable Care Organizations. NEJM. http://www.nejm.org/doi/full/10.1056/NEJMp1009040
$10B CMS Innovation Center to pilot eCare. http://mobihealthnews.com/7587/10b-cms-innovation-center-to-pilot-ecare/
Bluetooth Blood Glucose Meter Now Interoperable With Nokia Phones. http://www.medgadget.com/archives/2010/04/bluetooth_blood_glucose_meter_now_interoperable_with_nokia_phones.html
Watson et al. “Diabetes Connected Health: A Pilot Study of a Patient- and Provider-Shared Glucose Monitoring Web Application” Journal of Diabetes Science and Technology, March 2009, Volume 3, Issue 2: Page 345-352. http://www.connected-health.org/programs/diabetes/research-materials--external-resources/diabetes-connected-health-a-pilot-study-of-a-patient--and-provider-shared-glucose-monitoring-web-application.aspx

Back Camera

I had been sick for about a week. My heart rate was high, my fever was up. I wasn't happy. So about 9 pm I called Phil and asked him to take me to the hospital. On the way over to our regular haunt, I asked him to redirect to the local "rich person hospital" because the line's always so long where we're regulars.

So glad we changed directions! It was amazing. I got there and Phil took me in. By the time he parked the car I had a bed in the ER. Within 20 minutes I had had my blood work, chest xray, head CT, and was waiting for results. I was in a room instead of a hallway. I had TV. Phil and I were watching football (figured the guy deserved it).

Eventually they came back and said nothing was wrong with me and I could go, Phil pushed back and the Dr. said she'd admit me. It took about two hours to get admitted, much shorter than any other admitting process I've ever been through.

A doctor came and took some stats and I got an Rx for what amounted to Nyquil and water. Eventually I got upstairs. During transport I got to see some pretty cool glittery tiles they have on their hallway ceilings.

Once I was on the floor I had a chance to sleep. I woke up at about 4am because I couldn't breathe. They gave me some drugs and back to sleep I went. At about 6 I woke up again because my arm hurt. It was huge, obviously my vein had blown and the fluid was filling up my arm. I hit the call button but no one came to fix it so I stopped the flow and tried to go back to sleep (but didn't). An hour or so later a nurse said she'd pull it out, but forgot. Wasn't too worried, now that the flow was off, it didn't matter too too much and eventually the fluid would disperse.

Eventually the doctor came to see me - he noticed my labs showed I had an infection (for me that could trigger this kind of episode) and pulled out the IV. Couple of days on antibiotics later, I was ok and on my way to CA.

I find it a bit ridiculous that my "best" hospital experience was one where it took them 3 hours to pull out a busted IV. What I find even more ridiculous was I had been in a primary care clinic three days before (I'll forgive the ER oversight since they eventually figured it out...). All they had to do was run a simple test and it would have saved me three days of being totally floored and a trip to the ER. A simple oversight cost the health system thousands of dollars. But that's a rant for another day.

But like seriously, my arm...

IMG_2050

So it finally happened. I passed out at work. On my way back from a seminar in the Switzer building I passed out. When I came to, Farzad Mostashari was checking my pulse. I remember looking up at his bow tie and kinda freaking out (It's an awesome bow tie and all, but he's kinda a big deal...). Then he was yelling my medical history across the parking lot at HHS. To I guess, the rest of his people, I think they're pretty much all doctors. Such a dignified moment for me.

Anyways, as this was the first time this happened at work, people pretty much insisted that I go to the hospital. Considering there were at least 10 doctors standing around, I figured they must be right (and if not, best to peace out ASAP!). ]I got a room in the ER where they did a standard workup. It checked out (as always). After about 4 hours I got moved to the hall. Sat there for a few hours. All of the sudden I get told that I have a visitor. I was expecting my "multiple delegates" from school, but not Wil and Sachin. For all their suits and hard work, those ONC guys are good people.

At this point I had been admitted and was waiting for a room. Just after Wil and Sachin left, some guy called me a "cracker ass ho" and let me know there was no possible way I could actually have health problems. He was laying on a gurney not even a foot from me and making my head hurt like hell since I had smacked it a few times since getting to the ER. It was at this point, Phil, Karen, and Matt came to visit and brought me a Happy Meal (best friends ever!). I remember hugging Matt and not wanting to let go. I wanted someone, anyone to hold on to.

Eventually my head hurt so bad that I left a note on my bed and found an empty waiting room and just sat for a minute. Unfortunately a resident found me. Apparently I wasn't supposed to be out of bed or off the monitor. But my head hurt so much and the guy yelling was just making it worse. Plus, the monitor was out of batteries and wasn't recording anything anyways.

IMG_2050

Upon making it back to the ER (we're at hour 12 here...), the resident put me in another room. Finally quiet. Five minutes later my bed was ready. Guess that just goes to show that when you give up, you get what you were waiting for.

Anyways, got my telemetry bed at 2Am. Finally got to sleep. Then rounding at 6. At 10 we had the cardiology teaching contingent. All 5,000 of them. So stressful to have all of these people in my room. The head pontificated saying there was nothing he could do.

I immediately lost it. I could have gone home the day before. Hours and hours of my life were wasted. I was yelled at. My head hurt. My friends could have taken me home hours before. I could have been home, asleep. But instead I had been convinced that someone was going to help me.

So I left. Unfortunately I didn't make it far. I made it to the exit and ended up half conscious on the stairs exiting the hospital. They called rapid response and took me back to my room. I remember the cleaning lady saying my bed wasn't clean, but they told her it was mine. I definitely wasn't being logical. It's weird that whole occurrence seems like a dream, as if I were under water for the whole thing.

An hour later I called Phil. I was so broken down I was crying, begging him to come get me. I didn't want to be there. Two hours later the neurology guys came to see me and seemed to have a remedy for what ailed me (had I known they were coming I wouldn't have checked myself out -- communication FAIL!).

Karen and Phil came to get me about 2PM. I wanted to go to school. They vetoed that idea (mom and dad are smart!). I had energy for about five minutes while Phil made sure that I got paper copies of my neurology session. Once I was back in my bed I started to crash. Transport got me to the lobby and had to leave before Phil got his car around. By the time they got me in the backseat, I was half conscious again.

I remember Phil and Karen getting Chinese food. They tried to feed me but I wasn't hungry. Then they took me home. My body wouldn't keep a temperature. First I was hot. then I was cold. They were worried. For the life of me, can't figure out why I got discharged. Phil wanted to check me back in, but eventually it was all good again.

No solutions, just a wasted night. But, hey, at least I had my people.

Hopkins

So I came back from CA, got in my car and drove up to Hopkins. They didn't have anything new to tell me about my condition, BUT they did have an awesome throughput system. You get to their atrium and you put on a wristband (you put your own info into a computer).

Then you go to cardiology and they hand you a buzzer like the cheesecake factory.

When it's your turn, it buzzes. No more signing in and being yelled at! By the time you see the Dr. your labs are complete, your echo is complete, your ekg done. And it's not just that it's done, it's that all the services are colocated and you don't have to run around. And then billing is a breeze.

Way to go Hopkins for making this super easy on me!

EssenceofGradSchool

I got this paper in on time. No excuses for this girl.

EssenceofGradSchool

Though, to start one IV, it required:

To start 1 IV:
- FIVE veins
- 2 nurses
- 3 needles
- 6 gloves
- 2 tourniquets
- 2 sheets
What'd my friends have to say?