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We, the undersigned, are patients, family caregivers and advocates who are desperate to receive the best care and treatment that we can in a way that enhances our ability to engage with our doctors and reduces stress on our already stressful lives. We are writing you today to ask that you hear our point of view as decisions are made on the Health and Human Services Office of the National Coordinator Proposed Rule to Improve the Interoperability of Health Information. as well as the Center for Medicare & Medicaid Services proposed rule to advance interoperability and patient access to health data.

Patients are the ultimate stakeholder in healthcare the ones with the most at stake in how well the system achieves its purpose, which is to care for people in need. Becoming a patient is not something we asked for or chose; yet we try to find ways to make the best of the situation and hopefully improve our care, lower our cost, and help those trying to care for us. To do this we must be involved in our health data if we want, as our stories below will make clear. 

We know you are hearing from technology vendors, such as Epic Computer Systems, as documented in this news story on CNBC about Epic’s letter to its users asking them to resist our access. We want to provide you with another side of the story: how it looks to us, the patients – the people for whom the industry exists, including those systems. Any solution that doesn’t work for us is a policy failure.


Like you, many of us have grown accustomed to managing key areas of our lives through our smartphones, tablets, computers, and other internet-enabled devices. We handle our finances, file insurance claims, manage our identities, and address other important and sensitive areas of our lives through these devices. 

Yet, somehow, in the year 2020 in the most technologically advanced nation on the globe, we, as American patients, remain unable to easily and quickly access our own health data, or to decide how it is used. This lack of progress is especially frustrating to us when the technology capabilities needed to help us by giving us access to our own health data have existed for many years, and could easily be used like they are countless other aspects of our lives.

Here are some of our stories about the impact of access – or lack of access – to our data when patients face medical challenges. (Readers, you’re welcome to add your stories in comments.)

Some examples we have faced:

  • 21 year old Morgan now has 23 different patient portals with 23 different subsets of her health information.  When she recently went to college, she had to spend hours and hours of her time, while not feeling well, requesting her medical records from 12 doctors in her hometown. She had to sign paper forms and pay fees for printed records. Despite asking for her information in electronic format, most providers mailed the records to her. She didn’t yet know who would need the records, but if she had, her doctors would have faxed the thousands of pages to her new doctors because they don’t have an easy way to connect to each other. As a 21 year old, Morgan prefers using technology and would like to have an app that could connect to all the electronic records in one place, but her doctors say their systems can’t connect to apps. This has not changed in the ten years since she was diagnosed. 
  • Amy was out of town for work when she had a kidney stone. It was not her first. She was seen in the ER and sent to a urologist. He had no way to access her records, and due to her extensive history, he needed to understand where previous scar tissue was before treating. Her treatment was delayed for three painful days and four sleepless nights while her doctor worked to get access to her prior images and records by fax and overnighted CDs. This is real patient impact – a failure of the system to accomplish available care, solely because the data would not move. It caused preventable suffering.
  • Regina Holliday had to fight for her young husband’s medical record when he was suddenly admitted to the hospital and diagnosed with kidney cancer. Instead of having access to his information to help get second opinions, to keep the information accurate, and to assist with decision-making for her husband, she had to fight for his records. She was told she’d have to pay 73 cents a page and wait 21 days to get access. She was finally able to get him transferred, but the record that was sent with him was astonishingly incomplete. The hospital had the ability to generate the record in 90 minutes as they eventually did when pressed by his new doctors. (See also positive addition below.)
  • Glen recently had surgery, and he does not have easy access to his information. They cannot find the lab report that determines if he should have chemotherapy and/or radiation. The oncologist is still looking for the report and is starting chemotherapy as a precaution and is holding on radiation until the report is located. Glen should have been able to receive that information via an API to a place of his choosing so that he still had a copy regardless of what his doctors did.
  • Sue, a mom of a rare disease child, found that getting second opinions or seeing a super-specialist for a rare disease means that the patient has the burden of gathering all of the medical records before an appointment can occur, or sometimes even before an appointment can be made. This often includes getting images on CDs and other difficult items, such as pathology slides. This is an enormous effort and puts a time and financial burden on the patient and their family, as well as delaying care. It is a system failure – the system failing to accomplish its purpose, due solely to absence of information that should flow freely to the point of need.
  • Grace, an advocate for patients with cancer, finds that oncologists are often missing information that is needed to inform tumor boards so that the oncologists can recommend the best care for the patient. Patients are often required to find and obtain all of their past medical records to make sure the tumor board has what they need to make the best recommendation. 
  • Grace is also the primary care-partner to 2 disabled adults and needs real-time access to all medical records for her mother, who is a breast cancer survivor, and her youngest brother, who is learning disabled and has hearing loss, to coordinate their intricate care, as well as to maintain Social Security and disability benefits. Meticulous record keeping is essential to continuity of care, as well as to clinically support evidence of disability and demonstrate medical necessity of support services, but it is impeded by today’s inability to have the information flow freely. In cases where coverage is denied by Medicaid, having the medical records on hand to formulate a strong, evidence-based appeal is critical in overturning erroneous denials. She is haunted regularly by how many others suffer from loss of support and denials because of rampant information blocking.
  • Adrian, a non-practicing physician, manages the care of his 93 year old mom from 200 miles away. Mom, still living in her condo after 45 years, visits six or more different practices in an average year. Some of these practices use Epic. Some use other EHRs. Some are informal “curbside” consults.  Even as a physician, it’s not easy for Adrian to keep his mom out of emergency rooms and hospitals. Sometimes, a practice asks for his mom’s current medications. None of those EHRs is responsible for keeping an accurate and authoritative list that her various provider systems and Adrian can rely on. A functioning API would enable him and at least one of her practices to assemble even a minimal longitudinal health record. Adrian  says, “Please, ONC, keep the API rules at least as strong as the current draft and do not delay implementation and enforcement. My mom will be 94 in April.”
  • Virginia, a veterinarian, is severely allergic to penicillin. After giving birth she acquired an infection. A nurse came to give her an injection – of penicillin. It turned out the chart had never been updated with the allergy. Without access she had no way to detect the error and help improve the chart.
  • Janice checked in for her scheduled bi-annual breast exam only to be told they could not provide the mammogram because they had found something on her films two years earlier, and she had never come in for the follow up. She never received any notification in her patient portal, and for some reason breast imaging and mammogram visits are not visible in the integrated systems patient portal.  If she had been able to access the information or receive alerts, she could have had the follow-up visit.

See also several stories in comments below.

Some ways patient and family engagement in chart data has helped patients:

  • When Morgan (above) went to college, she changed hospitals for her IVIG treatment, to which she had previously had three severe reactions, resulting in three costly, dangerous and painful cases of aseptic meningitis. She worked with her doctors to find a protocol that allowed her to get the IVIG treatment without getting meningitis. When she got to the new hospital, she brought a printout of the information from her prior hospital’s EMR. She was able to share it to make sure it was followed and that she didn’t get meningitis again. (If she’d not brought it, care would have been delayed or uninformed.)
  • 74 year old Betty was diagnosed with lung cancer and wanted to go to MD Anderson where she thought she would receive the best care. MD Anderson required her records be sent prior to the visit, and her first doctor sent them via Fedex. After she flew to Houston, stayed in a hotel, waited several hours to be seen, the hospital couldn’t find the Fedex package that housed the records and discs. (Paper gets lost!) Thankfully, she had manually gathered all of her health records, including images, and had them with her on her iPad. Otherwise, she would have had to wait weeks for another appointment, book more expensive flights and hotels and have her treatment delayed. She looks forward to the day when that information is available electronically so she didn’t have to do so much work to get it and to put it into the app herself. We ask: isn’t that what computers are supposed to do??
  • When Regina Holliday finally got access to her husband’s chart (on paper), despite having no medical training she was able to identify information that the doctors had missed or gotten incorrect, including the need for a catheter and a doctor’s order for a walker (to reduce pain from bone metastases) that had never been filled. Care was improved simply by putting new attention on existing information, which was achieved through caregiver access enabling patient and family engagement.
  • Grace has an anaphylactic morphine allergy. She and her family carefully review all medical records and repeatedly point out that the life-threatening allergy is often missing. She has advocated for herself numerous times before procedures, surgery, and even childbirth to be certain that she is flagged as having a morphine allergy in her records and with a wristband. Without access to her records, she would have had to trust or remember to ask. It’s a matter of patient safety. 
  • Dave, 56, was diagnosed with Stage IV kidney cancer with median survival 24 weeks. He was allowed to participate in his tumor board, where the treatment options were discussed. An oncology resident pointed out that the best possible treatment was contraindicated by the presence of Migraine on Dave’s problem list. Dave and his wife said “No – he has ophthalmic migraines,” a very different thing. The misleading chart info was detected and corrected; the treatment was approved and succeeded. 
  • Dave’s mother Anne, age 84, had a successful hip replacement and was transferred to rehab. Somehow her thyroid condition was transcribed wrong – hypo vs hyper. Fortunately the family asked to check the chart and found the mistake, which was quickly corrected, avoid potentially severe harm untold expense, and significant reputational damage to the facility.
  • Two years later Anne’s new eye doctor said he was scheduling her for surgery. She asked why; he said “Because you have diabetes.” “No I don’t!” she replied. It turns out a clerical person had wrongly added that diagnosis.

We find it unconscionable that any EHR developer would on the one hand claim to be looking out for our interests, while disavowing any responsibility for the presence of errors entered in the chart by busy clerical staff and time-pressured clinicians, in systems that are so hard to use they’re described as Death by a Thousand Clicks. The remedy for this problem is obvious to us: let patients help! Let us see every bit of the data in these systems. Nobody but us has more at stake with their accuracy, and we are indignant that some don’t want to make it easier for us to bring it all together.

As patients who want to be engaged in our health, we see glimpses of hope, such as the 21st Century Cures Act – but we cannot be engaged if we don’t know what’s going on and can’t share it with our care team. Ironically, the more complex a case is, the more urgent is the need for coordination through data flow, and the more harm is done when information won’t flow!

We get excited learning about the ONC proposed rule that would give us better access and control over our own health data and where it goes. We personally know the difficulties and nobody needs to explain what Information Blocking is to us: we knew what it meant as soon as we first heard the term, because we have experienced what it is to ASK for information and have it not come to us. We have lived it, many of us for years, while we wait for it to improve. 

We share the hope in our patient communities of these new rules that would prevent electronic medical record users from holding OUR health information hostage. We get discouraged when we see articles of huge companies, such as Epic, or their lobbyists, talking about how sharing the data is bad for their business and the state’s economy. How dare they suggest that they should be the beneficiary of first concern! They have built prosperous businesses, in part with our hard-earned taxpayer billions, and they need to be required to at least give us our data, using modern technology, in modern, simple fashion, and let us, the person whose care it enables, decide where the information needs to be sent. 

Healthcare has long been a paternalistic environment. Patients are told to do what the doctor says, but as technology has advanced, many of us have found each other in patient communities and learned additional information, read medical journals and done their own research to find treatments and cures, and have analyzed their own data individually or in groups to advance medicine. It’s supremely ironic that Epic would in one statement insist that THEY control the movement of our data, while in another statement warning that we don’t know what we’re doing, and if we get our hands on the data we might LOSE control.

For vendors to justify resisting the proposed rule to “protect” patients from their own naivete is classic paternalism, implying that today’s patients don’t know what’s good for them. We will decide that for ourselves, thank you. We will decide what American healthcare needs, to move toward better patient experience and outcomes.

We find it cruelly ironic that we can’t get our data, yet the headlines are full of stories about that same data being shared with companies without our knowledge. It is “de-identified” (which experts say is a farce), or sometimes NOT de-identified, and sold without our consent and no option to opt-out. To then say they want to keep our data locked up to protect us is ridiculous! And that’s not to mention often-reported data breaches and ransomware attacks at hospitals and health insurance companies.


We support advancing privacy protections that help keep patient data safe, but this should not come at the expense of sharing the information with our doctors or getting a copy of our own information – our data should move to where we want it to be! We support requiring apps that house patient data to follow codes of conduct and disclose how the data will be used in clear, easy to understand terms. 

However, this should not prevent this ONC rule from moving forward and beginning the end of information blocking so that we can have access to the information we need. Remember, our health information is not the electronic medical record’s intellectual property. We are the ones who suffer if the data doesn’t flow to the point of need. It is unconscionable for any commercial interest to outrank achieving the care for which the whole system exists. Unconscionable.

We support the ONC proposed rule moving swiftly to finalized status. American patients must be empowered to direct how their health data is used. Until then, patients will too often continue to suffer when failure of information to flow causes a failure of the healthcare system to fulfill its purpose.

We can do better. Thank you.

Signed by patients, caregivers and their advocates:

  1. Morgan Gleason – @Morgan_Gleason, co-author
  2. Dave deBronkart – @ePatientDave, co-author
  3. Michelle Temple
  4. Tammy Weinbach
  5. Joshua Green
  6. Courtney Ellis
  7. Sue Carpenter
  8. Travis Bond
  9. Mike Gleason
  10. Adrian Gropper – @agropper
  11. Regina Holliday – @ReginaHolliday
  12. Susan Mazrui – @SPMazrui
  13. Casey Quinlan – @MightyCasey
  14. Ryan Curtsinger
  15. Rebecca A. Brandt R.N.
  16. Janice Tufte – @Hassanah2017
  17. John Haughton MD – @Doc4Care
  18. Stacey Tinianov, BCPA – @coffeemommy
  19. Monica Dudley Weldon – @mlweldon5
  20. Abigail Johnston
  21. Mara Keys
  22. Jacob Reider – @jacobReider
  23. Amanda Henson
  24. Megan-Claire Chase
  25. Austin Jones
  26. Mark McFall
  27. Joanne McFall
  28. Francie Grace @FfancieGrace
  29. Bray Patrick-Lake – @BrayPatrickLake
  30. Lori Adelson – @LoriAdelson2
  31. Kate Onk – @Kate_chain
  32. Veronica Combs
  33. Barbara Stout
  34. Cindy Chmielewski – @MyelomaTeacher
  35. Sylvie Leotin – @sleotin
  36. Madison Davis
  37. Larry McFall
  38. Sara McFall
  39. Mitali Dave
  40. Anna Ramsey
  41. Andrea Downing – @BraveBosom
  42. Emily Paterson
  43. Eva A. May
  44. Grace Cordovano – @GraceCordovano
  45. Mike McFall
  46. Tracy McFall
  47. Kristen Valdes – @KristenValdes
  48. Sharyn Kerwin
  49. Vincent Keunen – @vincentKeunen
  50. Burt Rosen – @burtrosen
  51. Soojin Jun
  52. Kristen Conklin
  53. Lygeia Ricciardi – @Lygeia
  54. Rebecca Kirkland
  55. Greg Weidner – @GregWeidner
  56. Jim Kragh
  57. Swapna Kakin
  58. G. M. Selemon
  59. Anna McCollister – @AnnaMcTweet
  60. Brian Gillespie – @mandowntri
  61. Stacy Hurt, MHA, MBA – @stacy_hurt
  62. Brenda Denzler – @TheBigOrigScary
  63. Debra Cobb
  64. Ashley Dauwer – @AMarieDauwer
  65. Lisa Davis Budzinski – Central Pain Nerve Center – @LisaDBudzinski
  66. Stacie Lindsey, CEO & Founder, Cholangiocarcinoma Foundation – @CureCC
  67. Beth Barnett, Board Certified Patient Advocate (BCPA) – @bbarnet9
  68. Marjorie Spencer
  69. Claudia Williams – @ClaudiaWilliams
  70. Marge Benham-Hutchins – @MargeBHutch
  71. Julie Fomenko
  72. Shree Thaker
  73. Debra Cobb
  74. Nick Dawson – @NickDawson
  75. Christy Collins – @_chrisco
  76. Tessa Morbidelli – Tem0022@outlook.com
  77. Harlan Krumholz – @harlanKrumholz
  78. Rashmi Sinha
  79. Janet Freeman-Daily – @JFreemanDaily
  80. Melinda Bachini
  81. Alex Barker
  82. Sarah Greene – @ResearchMatters
  83. Carolyn Petersen
  84. Peter Elias – @pheski
  85. Stacey Simpson Duke
  86. Amy Price – @AmyPricePhD
  87. Ryan Spikes
  88. Kelly Shanahan
  89. Tambre Leighn, Patient Advocate, Caregiver
  90. Patty Spears
  91. Elisha R Baker IV
  92. Matt Might – @mattMight
  93. John Moehrke
  94. Trish Waller
  95. Megan Golden
  96. Christopher Adkins – @yookteam
  97. Donna Cryer – @DCPatient
  98. Keith W. Boone – @motorcycle_guy
  99. Joan Hyatt
  100. Melonie Darcy
  101. Manny Hernandez
  102. Matthew Holt
  103. Marc L Rubin, BScPharm, RPh
  104. Debi Ogle
  105. Erica Johansen (son @The Gr8Chalupa)
  106. Elizabeth Donley
  107. Brian Donley
  108. Nicole Rochester MD
  109. Janice McCallum
  110. Jon Mertz – @jonmertz
  111. David Cordier
  112. Asha Tiwary
  113. Michelle Best
  114. Lisa Nelson
  115. Linda Stotsky
  116. Greg Merritt
  117. Vince Kuraitis – @VinceKuraitis
  118. Fred Trotter – @FredTrotter
  119. Kirstan Vandersluis
  120. Lisa R. Nelson – @JanieAppleseed
  121. Michele Norton
  122. Courtney Larned
  123. Bailey Paxton
  124. Bracken Christensen
  125. Donna Scott, patient, patient advocate, believer in patient’s rights.
  126. Gail Keenan
  127. Banu Arunachalam
  128. Sarah Gilstrap
  129. Katie McCurdy @KatieMcCurdy
  130. Joe Markland
  131. Michael Golded
  132. Matthew Salvetti
  133. … more coming

To add your name as a signer, add it in a comment below. We’ll copy them into the post here as time allows.

 

 

 

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