When Patient Advocacy Goes Global

When Patient Advocacy Goes Global

It was an honor to discuss Innovation in Patient Engagement From the Patient & Carepartner Perspective at the 9th Global Digital Health Partnership Summit.

Understanding the patient is of essence and yet the word “patient” is one of the most misunderstood words in healthcare’s vocabulary. There is a patient life experience continuum that best captures what it means to live life as a patient where there are 5 categories of being a patient.

First is the proactive wellness seeker who may be generally healthy. Then is someone who may have had an acute encounter with the health care system: perhaps someone rushed to the ER after a motor vehicle accident or a work-related accident that needs stitches. Next is the person living with chronic illness or multiple comorbidities. The fourth category is an individual who receives an life-altering life-limiting diagnosis like cancer or ALS. The fifth and final category is active death or end of life care.

All of these are patients with unique experiences and unmet needs but this is a very clinical view of the patient. We must also incorporate social determinants of health as we look to understand patient experiences where they are. Any individual living with the impact of social determinants of health is going to face greater barriers to accessing health and good patient experiences and care overall. This is survival mode, not consumerism. The difference matters.

Here’s what is at the top of my list as we globally explore and prioritize what we convert from white papers to real-world workstreams when we think about patient engagement:

  • Reduce patient administrative burden to make life with a diagnosis easier
  • Digitize inefficient patient workflows
  • Improve channels for direct communication with staff at health care delivery organizations
  • Include patients’ carepartners in engagement strategies
  • Embrace patient and carepartner insights throughout your patient engagement innovation lifecycle
  • Connect patients to peer health and community health support

Innovators and stakeholders must recognize:

  • where patients are in their Life Experience Spectrum
  • assess #SDoH/barriers to engaging in care
  • Listen & learn from patient stories, like the Patient Impact Stories Library

I look forward to seeing if the world listens and really hears what patients want and need in 2022.



It’s October, or Pinktober, as we witness the transformation of basically everything, from tortilla chips, to dogs, clothes, athletes uniforms, billboards, feather boas, and all of social media for breast cancer awareness month. It’s time to refresh the message.

We are aware of breast cancer. What many aren’t aware of is that a specific type of breast cancer, metastatic breast cancer (MBC), has no cure. It will kill every single person diagnosed with it. That’s a far cry from all the hopeful pink washing that happens every October. Breast cancer is not pink, cute, fluffy, or fashionable. The only thing that will save those with MBC is research that will drive cures and improve the lives of those living with the disease.

Did you know that in the United States alone, someone dies from breast cancer every 14 minutes? This number has not changed significantly in over 40 years. Making everything pink in October to drive awareness has not reduced this number or improved statistics.

Did you know that about 30% of people who have been treated for early stage breast cancer eventually develop stage IV breast cancer?

Did you know that out of all the funds that are donated and collected, only a very small percentage of money, only about 2-5% goes towards studying metastasis and metastatic disease? This is a major problem in the research funding prioritization and structure.

What will improve the statistics and save people’s lives is funding research to better understand what drives metastatic breast cancer so we can develop better treatments and therapies.

Metastasis and metastatic, stage IV disease is what kills patients with breast cancer. Metastatic breast cancer is a terminal disease that can impact both men and women.

METAvivor remains the sole US organization dedicated to awarding annual grants for funding stage 4 breast cancer research via its grant program. Unlike other fundraising efforts for breast cancer awareness, 100% of every donation to Metavivor goes to fund metastatic breast cancer research. For more information on Metavivor’s research and grant program, check

Another option for patients to consider learning more about and potentially participating in is the Metastatic Breast Cancer Project. The Metastatic Breast Cancer Project is a nationwide movement to accelerate research for metatstatic breast cancer by welcoming patients living with metastatic breast cancer to contribute their tissue and their medical records to advance research.


Clinical Decision Support (CDS): Accessing Data You Don't Even Know Exists

In a recent WIRED article, The Pain Was Unbearable. So Why Did Doctors Turn Her Away?, Kathryn, who was hospitalized due to complications and suffering from her endometriosis, was denied pain medication for her excruciating condition.

I don’t think you are aware of how high some scores are in your chart,” the woman said. “Considering the prescriptions you’re on, it’s quite obvious that you need help that is not pain-related.“ 

According to the article, Kathryn was unexpectedly abruptly discharged from the hospital while still in poorly controlled pain. Two weeks later, she reported being “terminated” from her gynecologist’s practice.

“Kathryn received a letter from her gynecologist’s office stating that her doctor was “terminating” their relationship. Once again, she was mystified. But this message at least offered some explanation: It said she was cut-off because of “a report from the NarxCare database.”

According to the Appriss Health website, NarxCare is a “robust analytics tool and care management platform that helps prescribers and dispensers analyze controlled substance data from Prescription Drug Monitoring Programs (PDMPs) and manage substance use disorder. NarxCare automatically analyzes PDMP data and a patient’s health history and provides patient risk scores and an interactive visualization of usage patterns to help identify potential risk factors.”

NarxCare reports include Narx Scores or risk scores demonstrating a past prescription history of opioids, sedatives, and stimulants. Their proprietary algorithm considers a variety of weighted measures to determine an Overdose Risk Score that ranges from 000 to 999. The higher the score, the higher the risk of an unintentional overdose.

In a patient information sheet, Appriss Health states, “None of the information presented (in the NarxCare Report) should be used as the sole justification for providing or refusing to provide medications. The information on this report is not warranted as accurate or complete.

In Kathryn’s case, she determined she was wrongly red-flagged, and her scores were abnormally high due to prescriptions her sick, elderly dogs needed.

The two canines had been prescribed opioids, benzodiazepines, and even barbiturates by their veterinarians. Prescriptions for animals are put under their owner’s name. So to NarxCare, it apparently looked like Kathryn was seeing many doctors for different drugs, some at extremely high dosages.

Had Kathryn not looked into the matter, she would have never known about the error in her reporting.

If other stakeholders have access to NarxCare, or any other CDS, data, and reporting, patients should also have access, especially if the report is not warranted by the manufacturer as accurate or complete and is used to determine the course of their care.

In the FAQs of the patient information sheet, Appriss Health states patients should “contact their state PDMP program to determine if and how they may obtain a copy of their PDMP Report.” After reviewing the NJ Prescription Monitoring Program site, I was unable to find any avenue for patients and consumers to request copies of their NJ PMP data or avenues for filing amendments should any errors or discrepancies arise…such as the inclusion of a pet’s narcotic prescriptions. I have emailed for further assistance and will report back.

As a patient, if my doctor, hospital, cancer center, or any member of my care team is referring to the NarxCare report, I want a copy of it too for my continuity of care purposes. Patients living with pain in the chronic pain, chronic illness, and disability communities, as well as victims of abuse and trauma, frequently express their concerns on how different CDS strategies may erroneously negatively impact their care. In this piece, What Every Patient Should Know About NarxCare, Rochelle Odell writes,

As pain patients, we need to be acutely aware of the negative impact this analytics tool can have. Many of us have already been required to sign pain contracts, take drugs tests, and undergo pill counts. In 2019, Medicare will adopt policies making it even harder for patients to get high doses of opioid medication. Some insurers are already doing it. We’re already being policed enough as it is. I intend to ask my physician, pharmacist, and case manager if they utilize NarxCare. So should you.”

On Twitter, as part of a discussion thread in response to the WIRED article, Andrea Downing (@BraveBosom), security researcher, patient advocate, and co-founder of The Light Collective, pointed out that “as part of our designated record set, HIPAA covered entities are required by law to share the data and risk scores directly with patients. So… let’s start asking about these risk scores!”. She included a screenshot of the HIPAA Right of Access defining information included in the designated record set, as per below:


As a patient, we don’t know what we don’t know. With CDSS and AI-based decision-making increasingly woven into the workflows of patient care at healthcare delivery organizations (HDOs) and provider practices across the nation, patients need to know what data and reports are being used to make decisions about them and their care.

As patients, we should request from our hospitals, physicians, and cancer centers any data, reports, scores, etc. generated from CDS tools about us. Speak to your doctor and care team if they use clinical decision support like NarxCare reports and scores to guide your care. Request copies of these reports and review the information there. Ask questions about how the scores may be impacting your care. You can also request a copy of these reports through the medical records department.

We need to bring greater awareness and transparency about the data being generated about us. Together, we can make CDSS more aligned with humane patient care, more robust, all while also addressing stigma, bias, and inequities that may be introduced by current black box algorithms.

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA


What Message Are You Sending?

Being successful at patient engagement is high on the lists of many healthcare delivery organizations, practices, and providers.

Recently I required extensive testing and care for some concerning symptoms that raised red flags. Appointments with the appropriate specialists were scheduled. Tests and imaging were ordered and completed; the waiting game for test results and answers began.

The clock ticked. The sun rose and set. The symptoms continued. The anxiety climbed higher and higher.

Phone calls and text messages from concerned family members came daily: “Did you hear anything yet? Any news?”

Five days later, the answer was still the same: “No, nothing yet.”

I was checking my patient portals and email for alerts. I double-checked my cell phone for text messages and missed calls between meetings. I called the doctor’s office inquiring for any updates and left voicemails.

On day six, an email appeared in my inbox: [Bill Notification] Your Bill from XXXX Health is Ready.

I logged into the portal. I scanned the bill: $274.00, $49.75, $49.21, $65.87, $26.40, $49.21. Due August 9th. How could the bills for my visits arrive before I received any results or any care for my health concerns?

I checked my portal for results: nothing. Incredibly frustrated, I called the office (again.)

Where were my results? There’s a process in place to get billing out to the patient electronically, seamlessly, rapidly through a portal but not my actual results. There’s no system or workflow tying the two together. It’s important to give credit where credit is due: health care is very good at creating silos.

There’s a deadline for my outstanding balance to be paid but no deadline or sense of urgency to get what could be life-altering results to me in the same manner.

There were numerous touch points to try to engage me as a patient.

The next day I received a text message reminding me of my outstanding balance with an offer for support if I needed assistance or had any questions about my balances. I received the insurance explanation of benefits and didn’t have any questions except “Where are my results?”

The following day I received a message in my portal that the bill had been sent by mail.

On day 11, the doctor finally called at the most inopportune time when I had no privacy to discuss the results in detail. Some monitoring and follow-up would be required. We discussed a plan and agreed on next steps.

Before we ended the call, the doctor asked if I had any questions.

“Could I have a copy of all of these results?”.

She replied, “They’ll be in your portal. If not, contact our medical records department.”

“Do you have the phone number to the medical records department?” I asked.

“Hold on, I’ll transfer you to the front desk.”

“How can I help you?” the receptionist asked.

“I would like to request a copy of my medical records.”

“Have you set up your patient portal?” the receptionist asked.

“Yes, do you have the number to medical records?”

“You can just look on our website.”

[Click. Dial tone]

What message are you sending with your billing and patient engagement strategies? Patients should not be billed for their care before they have received their results. The order of operations in these workflows matter. Are you patient-centered or patient wallet-centered? Patients can see the difference.

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA


Freedom as a Patient

       With the celebration of the birth of our country approaching, we recognize, especially after living through a historical, global pandemic, that we are blessed with many freedoms. The COVID-19 pandemic showed us the good, the bad, the ugly, and the unfathomable. We must amplify the good and strive for inclusivity and equality. What would this look like in health care? What does freedom mean as a patient?

       As a patient, freedom means access to affordable, safe, compassionate care that preserves dignity and the quality of life.

       As a patient, freedom means having access to the information, tools, and technologies needed to make educated, empowered decisions about care.

       As a patient, freedom means having a voice, choice, and ability to participate in shared decision-making to arrive at the best decision for one’s life with a diagnosis.

       As a patient, freedom means having access to one’s health information even if it is distributed across multiple health systems, physicians, and health care delivery organizations.

       As a patient, freedom means having control of one’s data and health information as well policies and technologies that support data segmentation for personalized privacy.

       As a patient, freedom means social determinants of health are recognized as playing a key role in an individual’s health, and consequently, the ecosystem prioritizes connecting individuals to the resources and support they need to meet their health goals.

       As a patient, freedom means transparency, especially in matters of pricing, cost, reimbursement, data use, and patient safety.

       As a patient, freedom means a health care ecosystem that is inclusive, diverse, respectful and does not discriminate.

What does freedom as a patient mean to you? Does the above capture it all, or are there things missing?

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA

I Want Solutions

I Don’t Want Surveys; I Want Solutions

As a patient, the primary carepartner to 2 disabled adults, and a patient advocate to countless individuals, my life is inseparable from encounters in health care. From routine care, to urgent care, to emergency care, to life saving measures, to do not resuscitates, to active death care, and the mystery and heavy grief of death, no two moments are ever really alike. However, the barriers, shortcomings, and opportunities for improvement glaringly overlap and stick out over and over again.

It’s mind-boggling to wonder how one can continue to run into the exact same bottlenecks, the exact same problems, that exact same poor workflows no matter what the hospital, practice, or health care delivery organization.

Anyone who is a patient is familiar with receiving surveys at some point after their health care encounter or after their discharge. As someone who carefully fills out patient surveys and provides as much detail and feedback, positive or negative, as possible, I can’t help but wonder if patient experience surveys are enough.

I don’t want surveys. I want solutions. There’s no shortage of what I see as logical, simple solutions that should be implemented at hospitals, HDOs, or physician practices. Where do I go with them? Who do I talk to? There must be more than just tweeting about it. I’m not the only patient, carepartner, or advocate that has actual solutions and strategies ready to share and prototype. It’s time for a new department: The Office of Patient Solutions. I don’t want to fill out another survey; I don’t want to share my experiences. I want to apply my knowledge and experience to solving and co-designing real solutions that will make a difference in peoples’ lives.

I want to be able to connect with HDOs, hospital CEOs, and leadership teams to help them better understand the challenges I may face as a patient or carepartner, what the solution may be, and how to prioritize and collaborate in real-time to fix it.

Without a fancy professional network with ample opportunities to connect, most individuals will never get farther than the patient experience survey.

How can patients share their experiences but also discuss meaningful solutions at their local health center or physician practice? Stay tuned for our next exciting endeavor where we will take this conversation live.

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA

Information Blocking Rules

Information Blocking Rules: What’s USCDI Have To Do With It?

Sometimes it’s hard to keep track of every important resource, reference, and article. With all the buzz about the Information Blocking Rules, we’re here to make things a little easier.

What is Information Blocking?

There’s a broad spectrum of things that amount to “info blocking,” but in a nutshell, information blocking is when patients can’t get a copy of or access to their medical records when they request them, with some exceptions. From medical records requests being flat out ignored, to patients being told they must come to pick up their records in-person, to patients being charged high fees for requesting their medical records, these are all examples of information blocking.

Doctors may also experience information blocking, for example, when they, too, are trying to access their patients’ records from other care providers.

The Office of the National Coordinator (ONC) Cures Act Final Rule implements the interoperability provisions of the Cures Act to support patient control over their own health information.

April 5, 2021, was the Information Blocking Rules effective date, when all health care providers, certified health IT developers, and health information exchanges (HIEs) must fall in line with the regulations and share the data classes and elements designated by the United States Core Data for Interoperability (USCDI) set. This isn’t going to be an instant opening of the faucet where all patient data is readily available. For the next 18 months, the focus will be on a subset of patient data, as defined currently by USCDI (version 1) standard. By October 2022, the full scope of the Information Blocking Rules regulations is anticipated to go into effect as per this timeline of dates.

What on Earth is USCDI?

For more information on USCDI, start with the United States Core Data for Interoperability Fact Sheet and then head over to the main USCDI website. Intrigued and want to learn more? Dial into one of the USCDI Task Force meetings on Tuesday mornings from 10:30 am to 12 pm EST.

A list of the 2021 USCDI Task Force membership may be found here. (If you look closely, you’ll find one of Unblock Health’s co-founders on the list!)

For any additional questions, refer to ONC’s Information Blocking FAQs resource which is being continuously updated with content. Or continue to follow along with us at Unblock Health!

Yours In Unblocking Health,

Shahid Shah & Grace Cordovano

Let Us Back In

Let Us Back In

About a year ago, I was escorted out of a local hospital by a hospital security guard.

I was helping a patient who was rushed to the emergency room with excruciating pain. COVID-19 was surging in New Jersey. Hospitals in Bergen and Essex counties were crowded. But this patient needed me at her bedside. I knew all of the details and intricacies of her care and medical history. I grabbed all of her medical records in a binder, grabbed a mask, and met her at the emergency room. She was in so much pain, she could not move or speak. Breathing hurt. She could not relay her medical history or answer any questions. She couldn’t open her eyes as she was in such excruciating pain. She spoke in a barely audible whisper while trying not to move.

Primary carepartner

I spent the day in the emergency room, staying at her bedside, trying to help make her comfortable, answering doctors’ and nurses’ questions, ensuring pain medications were administered when nurses didn’t come back, and tests that were ordered were done when doctors didn’t check-in. I hunted for extra blankets when the patient was shivering. I grabbed a pair of gloves and cleaned up the vomit when the patient got sick, and changed the bedding and hospital gown. No one was coming to check on the patient. The ER was packed with patients and clearly short-staffed. Ambulances were lined up outside the doors.

Eventually, it was determined the patient had numerous blood clots and surgical complications and was admitted. I searched for transport staff when a room was assigned. I relayed information to the family. I called the insurance company and primary care doctor to help coordinate care.

I silently walked behind the hospital transport staff as they wheeled the patient to their room.

The patient was still in significant pain. I checked the IV. It wasn’t working properly. I was able to find a nurse to come to check on the IV; it wasn’t inserted properly. She removed the IV and attempted two other times to get it inserted properly. While she worked, she apologized for this mishap with the IV, mentioning how short-staffed they were. She talked about how the hospital was caring for so many patients with COVID-19. How scared she was of getting sick because colleagues were getting sick, and she had small children at home.

A good flow was established and additional pain medication was administered. The expression of pain on the patient’s weary face softened and she fell asleep. I sat by the bedside, watching the TV headlines as Governor Murphy declared an executive order shutting down the State of NJ and life as we knew it.

I had been at the hospital for almost 18 hours when a security guard told me I had to leave. No visitors allowed. I said I wasn’t a visitor but the patient’s advocate and primary carepartner. I acknowledged the severity of COVID-19 but the hospital was short-staffed. I explained my line of work. I begged to stay to help the patient. I promised I wouldn’t leave the room. I promised to wear my mask and use proper hand hygiene. I was ordered to grab my belongings and the patient’s and walked to the hospital exit.

The patient was in the hospital for another week. There was minimal communication from the care team. The hospital was severely short-staffed. The patient and the family did not understand the plan of care or what to expect. No one was answering their questions.

Nearly a year later, many COVID-19 No Visitor Policies still stand, barring primary carepartners and advocates from attending appointments and being at the bedside of patient care.

We can’t continue to exclude primary carepartners from their loved one’s care due to blanket COVID-19 No Visitor Policies.

Many of us are fully vaccinated. Ironically, many healthcare workers who are not fully vaccinated are permitted in the buildings with our loved ones.

Allow us back in.

The disconnect in communication due to primary carepartners not being able to attend appointments or being at the point of care endangers patient safety, impairs coordination of care, & adds significant burden, stress, and trauma to what may be already medically complex care situations.

There is no standardized process in place for primary carepartners to submit proof of vaccination and a form of identification to request being granted permission to attend patients’ appointments in person. Patients with medically complex conditions, disabilities, life-limiting, life-altering diagnoses, and those impacted by social determinants of health should not be forced to be separated from their primary carepartners, especially if they have been vaccinated and will wear a mask. It’s time for hospitals and health care delivery organizations (HDOs) to revisit their COVID-19 No Visitor Policies and allow primary carepartners who have been fully vaccinated to be welcomed back into the point of care. Hospitals and HDO should prioritize implementation of digital requests to attend appointments and care by way of proof of vaccinations.

Reach out to Unblock Health today to learn more about how to prioritize and implement these digital requests.

Yours In Unblocking Health,

Grace Cordovano

The Digital Divide Within

The Digital Divide Within

Lack of interoperability, HIPAA misunderstandings, and COVID-19 No Visitor Policies have created an overwhelming digital divide within the traditional four walls of medicine across the nation.

I’m looking at you: “innovative, award-winning, world-class, transformative, patient-centered” health care delivery organizations.

Patients who are in the hospital in critical care situations are unable to access their medical information and records in real-time. Their primary carepartners, families, and advocates have been prohibited from the bedside due to COVID-19 No Visitor Policies, leading to lack of communication, breakdowns in trust, and uninformed decision making.

When patients are in critical condition, i.e., sedated on a ventilator, on life support, in a medically induced coma, or recovering from surgery, their primary carepartners desperately ask the following questions:

  • Why can’t I see the records that the doctors, nurses, and care coordinators see?
  • Why are strangers (doctors, nurses, residents, physician assistants, discharge planners) making decisions about my loved one’s care without letting me see the same information and including me?
  • I’m the point person or designated personal representative for the patient. Why can’t I see the records that have been generated thus far? I know they have electronically available results.
  • No one is giving me updates. Is my loved one getting worse? Are they dying? I need to see the records..

Most hospitals don’t give access to medical records until well after discharge.Patients often lay in their hospital beds, watching as doctors and nurses carefully review information about them and their current health situation on computer monitors, laptops, and smart devices. Carepartners helplessly wait at the bedside or are home waiting for the phone to ring with an update, with no electronic access to real-time information.

We frequently acknowledge that there is a digital divide in many rural and marginalized communities. Yet, we never recognize the digital divide we have created in every hospital, cancer center, and health care delivery organization, where patients and their families do not have access to real-time health information that is the driving force of potentially life and death care decision making. Patients and carepartners are literally on the outside looking in hopes someone will share even a crumb of information.

This is a significant barrier in critical care and emergencies, in patients who are deteriorating and require emergency care, such as in COVID-19, and in making end-of-life care decisions, where patients do not have months or weeks, but rather hours and moments to make a decision.

These patients, carepartners, and family members may not have any access to the latest information and have been told they have to fill out a formal records request (and wait up to 30 days, if they are lucky).

These carepartners don’t want a copy of the patient’s records. They want to see the most recent and relevant results and findings guiding clinical decision-making to answer questions and make informed, educated decisions about their loved ones’ care. In some cases, they want to see records to see if life-support should be terminated, ventilators removed, or a risky surgery pursued.

In these critical care situations, it is unacceptable that health care delivery organizations withhold access to information, suggest people seek a formal medical records request, and wait up to 30 days as per HIPAA (right now), when the information is readily available electronically often footsteps away on their care teams computer or smart device screen.

The current status quo leads to significant trauma, breakdowns in trust, and hostage bargaining syndrome (HBS). HBS due to lack of access to pertinent information results in patients and carepartners not being equipped to ask questions, unable to discuss potential concerns, errors, or omissions in care, as well as exacerbating feelings of anxiety and fear of being labeled as a burden or difficult for fear that it could negatively impact the level of care the patient receives.

We know that HIPAA permits, though does not require covered entities and hospitals to share information in records during a care encounter that pertains to a patient’s care with carepartners and family members. This includes any person advocating for the patient’s care and safety, so long as the patient has not openly objected or specified otherwise.

While this is permitted as per HIPAA, it is far from routine in everyday clinical practice. This needs to change to do right by the patient.

Yours in Unblocking Health,

Grace Cordovano