Information blocking

When a Failing Heart Faces Information Blocking

A 65 year old patient with multiple comorbidities has been in & out of the hospital with what has recently been diagnosed as advanced congestive heart failure. The patient & family are advised to seek a 2nd opinion immediately to both confirm the diagnosis as well as to see if the patient is a potential candidate for a specific, last resort procedure. If the patient is deemed not a candidate for the surgery, at home hospice is advised to be urgently pursued.

The second opinion appointment can’t be scheduled until ALL pertinent records & images on CD are received AND reviewed by the 2nd opinion physician’s office (at another hospital, in another state). This pre-screening process is common at many disease-specific specialists’ practices, ensuring that only appropriate candidate patients are added to schedules that are already significantly overwhelmed with patient emergencies.

The patient & family asked the hospitalist and charge nurse to expedite forwarding records & images on CD to the cardiothoracic surgeon that would be doing the 2nd opinion. The family was told to go to the medical records office. Being that it was 6 pm, office was closed for the day.

The family returned to the hospital the next day, a Saturday morning, to pick up the patient being discharged & stopped by the medical records office which was, to their surprise and despair, closed for the weekend.

The patient’s portal hadn’t been updated with all the critical test results, radiology reports, or anything useful from this or the previous recent hospitalization. The were no MRIs, X-rays, or angiograms available, no lab work or any clinical notes. There was no way to report this back to the hospital to say: Why isn’t my patient portal updated?

Before they left the hospital, a nurse printed out a medical & radiology records request that the family filled out. The family was advised to go to the medical records office and SLIDE THE SIGNED REQUESTS UNDER THE CLOSED DOOR so when the office reopened on Monday morning someone would step on it receive it.

The family called first thing Monday morning to confirm the request was received and left a voicemail. They called 8 more times until finally someone called back that afternoon confirming the request was received. No further information was given as to when it may be ready except that the office was “busy”. The family begged in tears to expedite faxing the records and to have the images on CD be overnighted to the cardiothoracic surgeon’s office as this was the patient’s last hope. The medical records office representative said they would get the records faxed by end of week but that a separate request had to be sent to the radiology department to get copies of images on CDs. Also, CD’s could not be sent overnight as there was no mechanism to accept electronic payment or shipping for that request. Images on CDs would need to be picked up in person or mail standard US mail. The family needed to resend the radiology records request directly to the radiology department as the medical records department stated they did not handle those requests and they could not forward the request themselves as it was “not their responsibility”.

A member of the family needed to leave work early to go to the radiology department to demand a copy of images on CD now so they could be overnighted out of state at the family’s expense.

A patient’s heart is slowly failing and their last chance at hope is in a holding pattern due to a poor records request work flow. Imagine it was your parent’s heart, your spouse’s, or your own. What if this was your child’s heart?

A patient advocate had to step in to escalate and resolve the bottleneck, repeating many of the phone calls, faxes, and also going to the hospital in person, speaking to multiple managers and supervisors.

In 2020, this is the epitome of poor workflow, information blocking, patient harm, and insanity.

Unblock Health can ease the burden patients and their families face in acquiring records in a HIPAA compliant manner in the format they specify by automating the process. Instead of wasting precious time and effort pursuing multiple avenues hunting for medical records and images on CD, the patient’s advocate could have logged into Unblock Health to initiate a request and performed the following, entering:

  • basic patient information, name, date of birth, address, and a medical record number if available

  • the nature of the request and information blocking being experienced: for example, empty patient portal or emergency request to expedite records to an out-of-state specialist

  • the facility contact information that needs to receive the request

  • a signed medical records request, authorizing the hospital listed to release the patient’s medical records for emergency continuity of care purposes

  • the fax number, email address of the medical records office.

  • where the medical records needed to be sent: facility name, doctor name, their fax number, or mailing address.

  • contact information in case any questions arise,

  • a phone number and email for tracking and communication updates from the hospital.

The Unblock Health request is received by the healthcare providers office and a communication confirming receipt is sent to the patient. The healthcare provider may electronically inquire about the request if there are any questions or concerns, all documented and tracked within the Unblock Health platform. Unblock Health requests are triaged by urgency specified by requester. Urgent requests are flagged for expediting. Patients receive real-time tracking updates to monitor requests. Healthcare providers may send requested records to the specified healthcare provider as well as to the patient. Unblock Health requests are carefully tracked. If no response is received acknowledging receipt of the Unblock Health request within a business day for an urgent request, a reminder will be initiated. Requests that are ignored will be publicly addressed on a wall of shame and by tagging the facility on Twitter, tagging ONC, OCR, & HHS for awareness. Similarly, requests that are addressed and completed will be acknowledged in the public domain on the wall of data access champions, tagging ONC, OCR, & HHS for awareness.

It’s time to end information blocking by streamlining the way patients, their carepartners, and healthcare providers work together to handle medical records requests. In many cases, it’s a matter of life or death.

Do you have a personal experience with being unable to get a copy of your or your loved one’s medical records in the context of an emergency or earth-shattering diagnosis? How many phone calls and faxes did it take? Share your stories below. Share Unblock Health with patients struggling to get their health information today.

Yours in Unblocking Health,

Shahid Shah & Grace Cordovano

Social media got to do

What’s Social Media Got to Do With It?

Patients rely heavily on peer-to-peer health support through various social media channels, such as Twitter.Social media channels, like Twitter, are a conduit for exposing shortcomings and complaints, as well as celebrating good deeds and jobs well done.

Nothing goes viral faster than examples of human beings being taken advantage of or falling victim to broken practices and policies.

Cries of despair coming from sick patients who are being taken advantage of, receiving sub-par care, and forced to deal with unlawful, discriminatory practices are often very quickly shared and frowned upon.Tweets and tweetorials calling out such practices are often picked up by local media, journalists, and even exceptional reporting in big name publications & media casts. Company social media managers respond very quickly to mediate negative comments on Twitter.

Our professional word of advice: Don’t be caught dead being a data blocker that is impeding patient care, safety, and the patient experience.

What is your organization doing to prevent data blocking and to address lack of transparency? Do you know about the intricacies of how data blocking and lack of transparency at your organization negatively impact patient care, safety, and the patient experience? Is your organization or practice championing patient access to data? How are you conveying that information to patients so they may recognize your dedicated efforts?

Unblock Health provides patients and carepartners with a way to demand access to information that is critical for people to make informed, engaged, and empowered decisions about their care. Unblock Health also supports organizations and care providers in their quest to be HIPAA compliant, especially in the ever evolving regulatory environment, so they may meet patients where they are, address interorganizational inefficiencies, and become proud data liberators and access champions.

Social media got to do Unblock Health will bring clarity to opaque, poor HIPAA workflows that endanger patient safety, empowerment, and engagement.

But how does Unblock Health REALLY work? Our next piece will be juicy. Stay tuned!

Yours in Data Unblocking Health,

Grace Cordovano & Shahid Shah


Isn’t HIPAA Enough?

We MUST level the playing field so patients can fight back when faced with data blocking and lack of transparency.

It’s only a matter of time until it happens to you or your loved one. When you are dealing with a life-altering, earth-shattering diagnosis and you can’t get access to your medical records, it’s an absolute disaster. Trust us. We know professionally and personally. Together, we can eliminate data blocking, enhance information integrity, drive transparency, and truly empower patients. This is consumerism of the future.

The reality is, it’s not enough to be HIPAA 1996 compliant in our digitized world. The new Roaring 20’s expect bigger and better things! Unblock Health recognizes that HIPAA repeatedly and regularly fails patients and their carepartners daily. HIPAA violators are not held accountable. Those that are data liberators are not nearly celebrated enough as ecosystem role models. Patients and consumers have a right to know who is creating barriers and who is paving the way for them to be successful in their healthcare journey. Unblock Health will be leveraging the power of social media to lead REAL change.

Unblock Health is revolutionizing patient empowerment, real-world interoperability, and transparency of the future. Unblock Health tackles real-world patient unmet needs, providing the actual interoperability people and consumers need to be informed, empowered, and engaged members of their healthcare journey.

HIPAA Looking to end data blocking? Are you seeking transparency? Unblock Health will lead the way.

But what does social media have to do with it? Glad you asked! Don’t miss our next piece! Can’t wait that long? We don’t blame you! Dive in at and don’t hesitate to reach out with any questions.

Yours in Data Unblocking Health,

Grace Cordovano & Shahid Shah

data blocking

What is the Value of Unblock Health?

Data blocking and lack of transparency are 2 of the biggest detriments to not only patient empowerment and engagement, but also to patient care, safety, the patient experience, and consumerism.

Point of care is in a state of dynamic metamorphosis. Gone are the days where doctors only know best. There is a clear shift from paternalistic to participatory medicine, where patients are not only demanding the driver’s seat to their care, but are also hitting the accelerator and driving through any barriers in their way.

Patients and consumers want access to their health information where they are, immediately, at the touch of their fingertips, especially when their life, or their loved one’s, depends on it.

Unblock Health is designed to authentically meet patients where they are, supporting their struggles with data blocking and lack of transparency in their local communities and care settings.

There are currently no other patient self-advocacy tools to:

  • facilitate and digitally support patient-initiated amendment requests.

  • assist patients struggling with data blocking. Tracking barriers to data access, documenting and reporting HIPAA violators, as well as celebrating data liberators, are critical to the future of healthcare, authentic consumerism, and real-world interoperability.

  • assist patients in requesting their data from mhealth and digital health technologies, such as, but not limited to, wearables, apps, remote patient monitoring devices, etc. Patients need real-time access to all their data for it to be actionable.

  • request an itemized list of where their data has been shared and/or sold.

DATA BLOCKING Unblock Health is glowing with value for patients, carepartners, consumers, and care providers who are ready to champion data access and end information blocking

But what about HIPAA? Isn’t that enough, you ask? Stay tuned for our next piece! Can’t wait that long? We don’t blame you! Dive in at and don’t hesitate to reach out with any questions.

Yours in Data Unblocking Health,

Grace Cordovano & Shahid Shah

patient advocacy tool

What is Unblock Health?

Unblock Health is a first-in-class patient advocacy tool designed for patients and consumers who are determined to be empowered in their health care journey and are no longer willing to accept traditional barriers to their information. Unblock Health is armed and ready to address common, real-world, unmet needs patients, their carepartners, and consumers face daily.

Unblock Health is designed to:

  • hold healthcare organizations & care providers accountable when they do not release medical records in a timely, HIPAA compliant manner, while carefully tracking the process of interactions needed. Functionality is in place to publicly report both data blocking and HIPAA violators in real-time as well as to celebrate data liberators and access champions in the public domain

  • request patient-generated health data (PGHD) from mhealth & digital tech devices and apps.

  • request an itemized list of all the places that one’s health information has been “shared” or sold to facilitate transparency and awareness of human data science practices.

  • facilitate a digital workflow for the implementation of addendums that may be flagged by patients and carepartners upon review of their medical records and health information.

patient advocacy tool Unblock Health is the key to the top 4 barriers patients and consumers face in making informed decisions about their care

But what is the value of Unblock Health, you ask? Stay tuned for our next piece! Can’t wait that long? We don’t blame you! Dive in at and don’t hesitate to reach out with any questions.

Yours in Data Unblocking Health,

Grace Cordovano & Shahid Shah

patient advocacy experience

The Birth of Unblock Health

Happy New Year 2020! With a new year and new decade upon us, we’d like to tell you the story of how Unblock Health was born.

Once upon a time, at HIT Expo 2018 in sunny New Orleans, a board-certified patient advocate and a health IT thought leader got to talking about patient unmet needs. The advocate fervently emphasized the struggles patients and their loved ones faced due to lack of interoperability, rampant data blocking, and little to no transparency while trying to navigate their life-altering diagnoses. The health IT thought leader emphasized the intricacies and challenges the IT community faced in delivering solutions. They both agreed that the sooner patients recognized that no one was coming to save them, the better off they would be. But once that realization came to fruition, how could patients be equipped with tools and strategies to stand a chance against the well-known barriers ahead?

Unblock Health is the culmination of over 20 years of boots-on-the-ground patient advocacy experience perfectly complemented with 30 years of leadership in digital tech, strategy, architecture, and engineering expertise to deliver an easy-to-use solution for the most neglected stakeholders in our health care ecosystem: the patient and their carepartner.

patient advocacy experience Patients need specific tools to drill through the barriers of data blocking.

We’ve personally and professionally witnessed the devastating, multi-faceted struggles people face while managing their care in the midst of a life-altering diagnosis. We’ve listened to patients’ frustrations and witnessed the barriers they face in accessing their data. We’ve heard patients demands for transparency and watched them be completely ignored. We know first-hand the grief, loss, anxiety, and distrust that stems from data blocking.

We have vowed to not stand back silently, powerlessly, and helplessly a moment longer.

What is Unblock Health? Stay tuned for our next piece! Can’t wait that long? We don’t blame you! Dive in at and don’t hesitate to reach out with any questions.

Yours in Data Unblocking Health,

Grace Cordovano & Shahid Shah