Many people are asking if they can add their stories or their signatures. Please do so in comments! We’ll copy signatures into the body of the post as time allows.
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:
- Morgan Gleason – @Morgan_Gleason, co-author
- Dave deBronkart – @ePatientDave, co-author
- Michelle Temple
- Tammy Weinbach
- Joshua Green
- Courtney Ellis
- Sue Carpenter
- Travis Bond
- Mike Gleason
- Adrian Gropper – @agropper
- Regina Holliday – @ReginaHolliday
- Susan Mazrui – @SPMazrui
- Casey Quinlan – @MightyCasey
- Ryan Curtsinger
- Rebecca A. Brandt R.N.
- Janice Tufte – @Hassanah2017
- John Haughton MD – @Doc4Care
- Stacey Tinianov, BCPA – @coffeemommy
- Monica Dudley Weldon – @mlweldon5
- Abigail Johnston
- Mara Keys
- Jacob Reider – @jacobReider
- Amanda Henson
- Megan-Claire Chase
- Austin Jones
- Mark McFall
- Joanne McFall
- Francie Grace @FfancieGrace
- Bray Patrick-Lake – @BrayPatrickLake
- Lori Adelson – @LoriAdelson2
- Kate Onk – @Kate_chain
- Veronica Combs
- Barbara Stout
- Cindy Chmielewski – @MyelomaTeacher
- Sylvie Leotin – @sleotin
- Madison Davis
- Larry McFall
- Sara McFall
- Mitali Dave
- Anna Ramsey
- Andrea Downing – @BraveBosom
- Emily Paterson
- Eva A. May
- Grace Cordovano – @GraceCordovano
- Mike McFall
- Tracy McFall
- Kristen Valdes – @KristenValdes
- Sharyn Kerwin
- Vincent Keunen – @vincentKeunen
- Burt Rosen – @burtrosen
- Soojin Jun
- Kristen Conklin
- Lygeia Ricciardi – @Lygeia
- Rebecca Kirkland
- Greg Weidner – @GregWeidner
- Jim Kragh
- Swapna Kakin
- G. M. Selemon
- Anna McCollister – @AnnaMcTweet
- Brian Gillespie – @mandowntri
- Stacy Hurt, MHA, MBA – @stacy_hurt
- Brenda Denzler – @TheBigOrigScary
- Debra Cobb
- Ashley Dauwer – @AMarieDauwer
- Lisa Davis Budzinski – Central Pain Nerve Center – @LisaDBudzinski
- Stacie Lindsey, CEO & Founder, Cholangiocarcinoma Foundation – @CureCC
- Beth Barnett, Board Certified Patient Advocate (BCPA) – @bbarnet9
- Marjorie Spencer
- Claudia Williams – @ClaudiaWilliams
- Marge Benham-Hutchins – @MargeBHutch
- Julie Fomenko
- Shree Thaker
- Debra Cobb
- Nick Dawson – @NickDawson
- Christy Collins – @_chrisco
- Tessa Morbidelli – Tem0022@outlook.com
- Harlan Krumholz – @harlanKrumholz
- Rashmi Sinha
- Janet Freeman-Daily – @JFreemanDaily
- Melinda Bachini
- Alex Barker
- Sarah Greene – @ResearchMatters
- Carolyn Petersen
- Peter Elias – @pheski
- Stacey Simpson Duke
- Amy Price – @AmyPricePhD
- Ryan Spikes
- Kelly Shanahan
- Tambre Leighn, Patient Advocate, Caregiver
- Patty Spears
- Elisha R Baker IV
- Matt Might – @mattMight
- John Moehrke
- Trish Waller
- Megan Golden
- Christopher Adkins – @yookteam
- Donna Cryer – @DCPatient
- Keith W. Boone – @motorcycle_guy
- Joan Hyatt
- Melonie Darcy
- Manny Hernandez
- Matthew Holt
- Marc L Rubin, BScPharm, RPh
- Debi Ogle
- Erica Johansen (son @The Gr8Chalupa)
- Elizabeth Donley
- Brian Donley
- Nicole Rochester MD
- Janice McCallum
- Jon Mertz – @jonmertz
- David Cordier
- Asha Tiwary
- Michelle Best
- Lisa Nelson
- Linda Stotsky
- Greg Merritt
- Vince Kuraitis – @VinceKuraitis
- Fred Trotter – @FredTrotter
- Kirstan Vandersluis
- Lisa R. Nelson – @JanieAppleseed
- Michele Norton
- Courtney Larned
- Bailey Paxton
- Bracken Christensen
- Donna Scott, patient, patient advocate, believer in patient’s rights.
- Gail Keenan
- Banu Arunachalam
- Sarah Gilstrap
- Katie McCurdy @KatieMcCurdy
- Joe Markland
- Michael Golded
- Matthew Salvetti
- … 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.
Please add my name as a signer
Please add my name as a signer.
Please add me as a signer, a patient, a care giver and a nurse and nursing Informaticist. Patient access to our own health information and data to better our care and wellness is long overdue!
Are you happy to have non-US citizens sign? If so, then count me in.
Thanks! You are certainly recorded here in the comments, but to avoid any “hairy eyeball” skeptics than we already have, I won’t put you up in the body of the post. :-)
Tell me though, Louise, since this is a patient/caregiver letter, do you have a patient/caregiver story where data access (or lack of it) caused help or harm? That would be a real contribution from Oz!
Please add my name and signature.
Please add my name as a signer
Beth Barnett,
Board Certified Patient Advocate (BCPA)
@bbarnet9
Melodie Peromsik heavenwarddesigns@gmail.com
Pharmacists in the retail environment can not make sound, clinical assessments, when critical medical information is not accessible .
Please add my name as a signer:
Stacie Lindsey
CEO & Founder, Cholangiocarcinoma Foundation
Lisa Davis Budzinski – Central Pain Nerve Center LisaDavisBudzinski@gmail.com
Becky Brandt – Central Pain Nerve Center
bbhomebody@gmail.com
Marge Benham-Hutchins mbenhamhutchins@yahoo.com
please add my name as a nurse, nurse educator, and family non-paid care provider!
Addition submitted electronically:
Anna has lived with complex, difficult-to-control, type 1 diabetes for more than 30 years. Despite the fact that she is highly “adherent” to her proposed regimen, she has developed significant complications from and co-morbidities to her diabetes. As a result, Anna takes 16 medications.
In addition, to treat and monitor her diabetes and its complications, she uses six different medical devices that generate accessible, usable, structured data.
To help manage her illness, Anna has 13 different physicians and averages more than one doctor’s appointment per week at a variety of offices, institutions and health systems. None of her physicians manage her illness. They consult with her to help her manage her complex conditions and ensure she has the knowledge and understanding it takes to remain healthy and productive.
None of her physicians can access all of her data. Instead, Anna provides the data that she has to her physicians, in paper form, for the physician or her staff to enter it into the record manually each time after each visit.
That manual process often results in errors and mistakes, for which Anna must remain vigilant and work to correct the records. The process is laborious and tedious and time consuming – and as a single, self-employed entrepreneur and consultant, the opportunity costs for the amount of time she spends managing her health information are substantial.
While the burden of managing her illness will never end, the burden of manually accessing, reviewing, transporting and sharing her health data from doctor to doctor can and must end.
The financial burden and opportunity costs of blocking data access are significant. The emotional and psychological costs of carrying the burden are toxic. Anna asks:
“What right does any company, medical institution, researcher or trade group have to limit the flow of my health data? Why do we prioritize the interests of those who received $48 billion in taxpayer funded incentives to promote EHR adoption over the needs of the patients those funds are designed to benefit? This system is supposed to be about facilitating health and care for patients not for EHR vendors and hospitals.”
Love my new “headshot”!!! ;-)
Thanks Dave!!!
xo
When I finally saw my doctor’s assessment of me in a note in 2010, he correctly noted I was morbidly obese. Seeing those terms in black and white propelled me to get serious about my health. My BMI is now 24. It was 54. That note saved me.
Fabulous story, Pamela. Good for you.
Stacey Simpson Duke – staceyduke@gmail.com
Patient generated data belongs to patients. They should be free to access & take it where & when they want without proprietary burden.
The patient is the ultmate arbitrator if information about them and so they need to be central in the loop.
Support the interoperability rules proposed by Mr. Azar. Godspeed.
I support making data easier to share.
Please add my name. Thank you for such a powerful article.
Tambre Leighn
Patient Advocate, Caregiver
tambre99@gmail.com
Please add my name!
I am not desperate, but I fully support my peers as my family.
My cancer story and my 10 years old son’s is at http://bit.ly/a7vkblogen
Please add my name.
Please add my name
Add me
Add me, please.
Add me
Add my name as a signer please
Add me please….Debi Ogle
DebiOgle@hotmail.com
Add me, on behalf of my son, August. @thegr8chalupa
Please my husband, Brian Donley and I. Thank you for all your drive and motivation. We hope you get to conquer this battle.
Please submit my name as a signer: Nicole Rochester, MD
Add my name.
Add me – Jon Mertz, @jonmertz
Add me
Please add my name- I’d like to support this!
Please Add me as well!
Sign me on, please!
Vince Kuraitis
@VinceKuraitis
Sharing patient info would have been invaluable in dealing with my late husbands medical appointments. He had 4 major brain surgeries, thyroid cancer, melanoma skin cancer, vision and hearing loss and 2 separate rounds of radiation over 13 years. There was an army of physicians who cared for him and syncing records or sharing could have been so helpful
Signed.
Please add my name as a signer. Thanks!
Dave, Thank you Dave and Morgan
for taking the time to formulate a collective voice on this topic so that patients and family care givers will be heard!
Please add my signature to this letter.
Lisa R. Nelson (aka Janie Appleseed) LisaRNelsonRI@gmail.com
So many ways that patients can help deliver better care for reduced cost and get better outcomes where patients have access to and are engaged in their health information.
Two short stories:
Once I took my Dad (who unfortunately suffered from dementia at the end of his life) to the pharmacy to fill a prescription for eye drops following his cataract surgery for the first eye (left). I noticed the instructions were for using the drops in his right eye, rather than his left eye. (simple typo on the code).
OD (Oculus dexter): Right eye.
OS (Oculus sinister): Left eye.
OU (Oculus uterque): Both eyes.
We were able to question the care instructions and alert the pharmacist of a possible error. She called the doctor and got this prescription fixed. If we hadn’t had access to that information, no one might have noticed. The nurse at the assisted living home might have dutifully applied drops in Dad’s right eye while the left one didn’t get the medicine it needed. Patient involvement leads to higher quality data and better outcomes!
At age 48, just after my annual exam, I read over the visit summary for my history and physical. I noticed in the procedures section that it said I had had a colonoscopy the year before, when in fact I had not. I had it on my radar for something to do at age 50. I knew that having that wrong documentation might lead to a nightmare when the time came to get my real colonoscopy done and paid for by my insurance. I worked with the office manager to get the records corrected, but it took weeks. They didn’t have well established procedures for dealing with legitimate documentation mistakes. We got it fixed, eventually, and my colonoscopy was able to be done at age 50 without any administrative problems with the insurance company.
When it comes to healthcare, Patients have real “skin in the game”. It is our bodies and minds and lives that are at stake. Who else would be more motivated than a patient to make sure his or her health information was documented accurately. That means we’ll have better data for Quality Measures and computer aided decision support. All those dreams for more uses of clinical data depend on the data being right–and Patients and Family Caregivers are uniquely positioned to help make sure the data is right.
Please add me!
Please add me.
Please add my name. Thank you!
Please add my name as signer. Donna Scott, patient, patient advocate, believer in patient’s rights.
Bravo on this excellent blog post and really bringing this important issue to light. Even though we are the other side of the border – this issue has very far reaching impact.
Great to hear from you again, Claire! I’d welcome your thoughts – got any stories (yours or another) to add to the collection? Our analytics say this is one of our most-read posts in some time.
Please add my name. I applaud this effort by consumers to demand that the flow of health care data be logically designed and available to patients and providers in a readily understood format to promote safe, effective, and efficient health care. The notion that interoperability (common high quality standards for format and content of data) can be achieved through uncontrolled innovating and weak standards is ludicrous and has resulted in the ever increasing complexities of health care data. High quality standards that are consistently applied are essential to ensure health care data flow and are available when needed.
Thanks,Gail. I agree about weak standards of course – imagine what the Web would be without HTML and HTTP that don’t work the same everywhere. Question: have you heard someone saying we can achieve interop without clear, strong standards? From your next sentence I’m guessing that’s what people must have said years ago (leading to today’s mess).
> ensure health data flow and are available when needed.
Yes, that is PRECISELY the point – data (and thus information, we hope) AVAILABLE WHEN NEEDED. No doctor or nurse can possibly perform to the top of their training if information is missing!
There’s no denying that, so when I hear of people resisting, the only possible conclusion I can draw is that they have some other priority than empowering clinicians with the information they need.
Please add me.
Please add my name.
Hi Dave, please add me as well!
Add my name
Add my signature, patient and patient family!
Please add my name as well!
Matthew Salvetti
Medallia
This article accurately describes all the positives and promise of interoperability. I have no issue with my doctor, nurse or pharmacist using interoperability to deliver direct patient care.
What I have issue with is my personal health information leaking from the EHR to other third parties who are then monetizing that information. Interoperability is trusted health care partners sharing information for the purpose of patient care. Interoperability is patients having access to their health information and being able to share that information with trusted providers.
When that information can be shared, no matter how “clear” the disclosure is to the consumer, with other third parties who are not providing patient care, that information will eventual be exploited in non-benevolent ways.
“De-identified” information is a red herring. Metadata can easily be used to re-identify people when combined with other transactional sources like credit card, HSA or banking. It becomes trivial when a MAC address like a phone is involved.
Lets find away to get all of the good about interoperability, while minimizing the follow on effects and negative impacts to patient privacy.
I’m going to post some additional stories that were submitted after this letter was first posted. Please keep adding them here, and encourage others – people in Washington are noticing!