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

On March 5, 2013, Eric Wickland crossposted a recap of my session cross-posted to Healthcare IT News("Acronyms abound in mHealth Ecosystem"), HIMSS, ("HIMSS13 mHealth session explores federal policy issues") and mHIMSS ("Acronyms abound in mHealth Ecosystem").

HIMSS13
Copied below:

Thinking of diving into the mHealth ecosystem? You'll need a really good grasp of acronyms. And a healthy dose of patience.

Attendees of the 2013 HIMSS Conference and Exhibition were treated to a primer on the alphabet soup of organizations in "Federal mHealth Policy 101," a Monday-morning education session presented by Jessica A. Jacobs, MHSA, CPHIMS. Her hour-long session targeted the bigger federal players, including the HHS, CMS, FDA, FTC, FCC and the Office of Civil Rights.

It also brought to the forefront the realization that, with so many organizations wanting their share of the mHealth pie, the required rules, regulations and standards aren't showing up with any degree of haste.

To wit: The FDA's final document regarding regulation of mobile medical apps has been expected for several months, and still isn't here.

"I have seen a lot of predictions that say March," Jacobs shrugged. "But who knows?"

Also in the pipeline is a regulatory framework for mHealth that's being put together by the FDA, FCC and ONC. That one at least has a deadline, Jacobs pointed out, though that deadline is roughly one year distant.

Jacobs, who has worked with the ONC, FDA and HRSA and chaired the mHIMSS Mobile Devices and Regulatory Implications group, put together a primer on the various agencies involved in mHealth that touched on their responsibilities. She also noted that many of the agencies share those responsibilities and are working together to make sure the landscape is properly regulated.

During a Q&A session, she was asked about Happtique, the New York-based app store that recently unveiled a standards program for apps. Jacobs said Happtique's program, set to launch this spring, may very well be like the Certification Commission for Health Information Technology's EHR certification program. When asked if mHealth regulations might be too strict, and therefore serve to stifle innovation, she said the federal government is trying to take a broad-based approach so that it doesn't hinder creativity.

The key to the mHealth landscape going forward, she said, is collaboration.

"There are a lot of cabinet players in this mobile health space," she pointed out.

“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"

8197658371_d50573660a

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