When I saw the announcement of Unblock Health by my friends and colleagues, Dr. Grace Cordovano, BCPA, and Shahid Shah, I knew I had to learn more and help them in their efforts to Unblock Health for patients everywhere. If you’re interested in helping patients have more of a voice in healthcare and access to their health records, then you’ll enjoy this interview with Grace Cordovano.
1) Where did the idea of Unblock Health come from? How did it come to be?
Once upon a time, at HIT Expo 2018 (Now called EXPO.health) 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?
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.
2) What are the main goals of 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:
1) 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.
2) request patient-generated health data (PGHD) from mhealth & digital tech devices and apps.
3) 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.
4) 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.
3) Who is behind Unblock Health?
Unblock Health is the culmination of Grace Cordovano’s 20+ years of patient advocacy experience perfectly complemented with Shahid Shah’s internationally renowned 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.
4) Can you give me some examples of problems you’ve seen that you’re working to overcome?
Here are 4 real-world examples of problems that patients, carepartners, and consumers struggle with daily that Unblock Health is armed to address:
1) Patients requesting access to medical records struggle with data blocking and this negatively impacts their care and safety, i.e.:
- patients diagnosed with a life altering diagnosis, such as cancer, cannot make an appt for a 2nd opinion until all of their medical records are reviewed by the potential 2nd opinion expert for approval. This causes significant delays in their care.
- without access to all of their health information, patients cannot determine if they are receiving standard of care, according to gold standard clinical guidelines.
- without a comprehensive understanding of one’s diagnosis, patients cannot adequately search for applicable clinical trials that may be of relevance.
- lack of health information places the patient at a significant disadvantage in fighting insurance denials as patients can not file for appeals or have the info they need to participate in peer to peer discussions with payers, leading to care that was prescribed by their care team being inappropriately denied.
2) Upon getting a copy of their medical records, patients may find errors, omissions, and inaccuracies in their records that can be detrimental to their care. Patients need to be able to request an addendum to their record to ensure comprehensiveness for continuity of care. For example, a patient diagnosed with a rare cancer has gotten a copy of their records and notices that their family history of cancer is missing from the clinical notes. As the appropriate treatment is being debated, the patient’s case goes to the cancer center’s tumor board. Because the significant family history of cancer is missing from the patient’s record, the potential of this being a hereditary situation is not discussed, with genetic sequencing and assessing whether there is a mutation that could be targeted is not considered. Implications: missed opportunities for targeted therapy or immunotherapy, exploration of clinical trials of interest, as well as negative impacts on QoL as targeted therapies and immunotherapy often have significantly less side effects.
Imagine another scenario where you have found someone else’s lab results in your patient record. As patients gain more access to their records, there needs to be a standardized method of quickly updating their records (not 60 days) to ensure all discussions on treatment and care delivery are based on correct, comprehensive information.
3) Patients are encouraged to utilize and adopt digital health technologies, with a significant push for remote patient monitoring (RPM), wearables, apps, etc., yet patients and their carepartners often do not have real-time access to the information that is collected. This makes data inactionable. A patient that had a cardiac monitor implanted to manage atrial fibrillation (AFib) requested that data collected be sent to their primary carepartner in addition to their cardiologist so that if AFib was detected, for example, in the evening or during weekends when the care team’s office was closed, the family could make critical decisions if needed. The manufacturer of the implanted device would not release the data to the patient as there was no way to do so. The cardiology team also declined to release information as they did not have a way to do so. After numerous instances of AFib were missed by the cardiologist’s office, the patient had a stroke and ended up in the ER. Patients and carepartners who are serious about being proactive in their or their loved ones care are being wrongly denied access to critical information they need. Patients need to be informed consumers and need access to the data from any devices, apps, etc. used to monitor their health so as to make actionable, real-time decisions.
4) As consumers, patients prioritize privacy and transparency. More and more, patients are alarmed by the reports of their data being “shared” and sold to 3rd parties for commercial profits. While deidentification of data for aggregation may be business as usual, the general public is not aware of these human data science practices. Patients are demanding to know where their data has gone but there is no standardized manner to request an itemized list of places and entities from their healthcare provider. For example, a person who was a patient at a cancer center of excellence in NYC learns from the press coverage that Flat Iron Health was acquired by Roche for $1.9 billion. This patient is appalled to learn that records from cancer centers were used in this acquisition and wonders if their records were a part of the deal. While all the standardized forms where signed at the drs office, he doesn’t believe that they were signed to authorize use of their data for commercial purposes. Upon reaching out to their cancer center, this patient receives no response on where their data went, if Flatiron Health received their data, and what other entities have profited at the expense of this patient’s diagnosis. The patient feels taken advantage of, feels powerless, and distrusts cancer center, doctor, and the ecosystem. Patients need to be able to request where their data has been shared/sold, who has accessed it, leading to improved awareness and education, as well as paving a way for in the future, having a means of opting out or granting access to one’s information. That is true consumerism.
Shouldn’t the government and their various laws be addressing these issues? Why have they not solved these problems?
There is tremendous work being done in the policy and regulatory landscape to improve patient data access and shine a light on information blocking. Policies and regulations are only as strong as their enforcement. We need to be holding data blockers accountable. Patients and carepartners need tools to empower them in their health care journey. Unblock Health meets patients and carepartners where they are, in their local communities, supporting them in directly addressing their barriers with respect to medical records and digital health data access, addendum requests, and transparency. We need to push back from top to bottom and from the bottom up to make change and transformation sustainable. Unblock Health is ready to help all patients locally.
What can patients do to support your efforts?
We encourage patients experiencing instances of information blocking, such as inabilities to access their records or health data information, to file record addendums, or to request for transparency, to register for an access invite at https://www.unblock.health/ – register. Don’t forget to follow us on Twitter @UnblockHealth and share your frustrations with data blocking with the registered hashtag #UnblockHealth. We’d love to also hear about patient stories and positive experiences with care providers that are access champions and data liberators using the same hashtag #UnblockHealth. Together, we will bring the realities of the barriers patients face boots-on-the-ground to the center stage and pave the way to change. Together, we can celebrate those who are leading the way and serve as a model for data access change.
How can hospitals and health systems work with Unblock Health?
Unblock Health is ready to partner with hospitals and health systems on multiple levels. Our solution is comprehensively primed with rich training, for both experts tasked with health information management and privacy as well as for patients and carepartners who are the consumers. Unblock Health is the answer to organizations’ headaches around strategically preparing for the implementation of the Information Blocking Rule and beyond when it hits the ground running. Organizations that fail to comply with the Information Blocking Rule can be subjected to potential civil monetary penalties of up to $1 million per violation. Unblock Health is a solid business strategy for hospitals and health systems to invest in to proactively prevent violations. It gives organizations an opportunity to get the pulse of its data access workflows by partnering with its patients, allowing them to easily, directly report barriers to the organization first as opposed risking having them immediately filing a complaint with OCR or ONC. Many instances of information blocking are due to poor workflows that are not meticulously designed or tracked. Unblock Health has taken all the guess work out to provide hospitals and health systems with a smarter, digitally streamlined system to help them become data access champions and pioneers. Unblock Health is also helping make the fax machine extinct and that’s something we can all revel in!