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

The Right to Inspect

The Right to Inspect

HIPAA grants individuals the right of access and the right to inspect one’s medical and health information within designated record sets maintained by HIPAA covered entities.

The right to inspect one’s medical records is not frequently discussed.

Why would someone ask to inspect their or their loved one’s medical record? What if you don’t want an actual copy of the records, but you just need to see them?

In the real world, the story is always the same.

A patient is hospitalized. The patient and their carepartner may have many questions that are unanswered about the current medical situation. The patient may be unconscious. Whether it is hospitalization due to a motor vehicle accident, a stroke, heart attack, a surgical complication, cancer treatment, COVID19, pregnancy, or a mental health condition, patients and their carepartners need access to information to make informed decisions about care.

Patients and their carepartners often wait for updates on test results, consultations, and diagnoses watching helplessly from the bedside. Doctors, nurses, clinicians, and members of the care team all refer to computer screens and smart devices for information about the patient’s medical condition. If the patient is not conscious or is unable to speak or advocate for themselves, the carepartner is often alone in their quest for the latest information.

Why isn’t it standard operating procedure to welcome patients and carepartners to pull up a seat, to view their caregiver’s screen, and welcome patients and carepartners desperate for information to follow along in real-time?

In critical care situations, there often isn’t time to formally request access and copies of all medical records. Some decisions can’t wait for days and weeks. Some decisions need to be made on the scale of hours, minutes, moments. We need to meet patients and carepartners where they are and support their right to inspect their medical records.

Sometimes patients and their carepartners need to see what the doctors and care team see to:

  • be on the same page.
  • participate in shared decision-making.
  • process the gravity of their current situation.
  • help make an unimaginable and unfathomable health situation somewhat tangible.
  • fill in missing gaps in information.
  • ensure nothing has been missed.
  • be confident that all information thus far is correct.
  • have all the information required to make a life or death decision.

The right to inspect medical records can be fundamental, especially in critical care circumstances. The rapid deterioration associated with many COVID19 cases has shown us how quickly and unexpectedly, people can become incapacitated and unable to speak and advocate for themselves. Primary carepartners play a significant role in needing to stay abreast of all of the latest information to make an informed decision about their loved one’s care. No Visitor Policies have further isolated patients and broken lines of communication between families and care teams.

We are failing patients and their carepartners in supporting their right of access to inspect their medical records. Frustrated and overwhelmed patients and primary carepartners are often heard saying the following:

“Why does everyone here know everything about my spouse/partner/parent/child/loved one, but I can’t see the same records also to be a part of the decision-making process?”

“Why isn’t anyone telling us anything?”

“I want to see what’s in my/my loved one’s chart.”

“Show me what you see on your screen.”

“Who made this discharge plan without my/our input?”

Patients and carepartners: don’t be afraid to ask to inspect and review the medical records used to guide clinical decision-making. While covered entities technically have 30 calendar days as a timeframe for providing access, many covered entities will be able to grant immediate access to electronic information thanks to health information technology. Be firm, especially when your loved one’s life depends on it.

In cases where the patient cannot advocate for themselves, carepartners should know that a covered entity may share the individual’s information with the family member or other person if the covered entity determines, based on professional judgment, that the disclosure is in the best interest of the individual.

Hospitals, healthcare delivery organizations, doctors, and practices should prioritize expediting access and the ability to inspect records, especially in critical care situations.

Sick Enough to Die & the Last to Know

Sick Enough to Die & the Last to Know

In a culture, society, and democracy that protects freedom of speech, we do a terrible job of talking about the one inevitable thing that unifies us all: death. Openly speaking about death is a rarity and often taboo. One word of advice goes out to doctors:

One word of advice

There are thousands and thousands of patients across the nation who are sick enough to die and don’t know. Diagnoses are delivered without an explanation of the severity and gravity of the situation. Treatments are recommended without explanations that they are not curative. Urgent procedures and surgeries are recommended without explaining the risks or impacts on quality of life. Palliative care is too rarely called in as an extension of the care team. Hospice is often called too late in the end of life trajectory. Families are entirely unprepared for the inevitable, sometimes lost in a sea of medicalese and incomprehensible vernacular.

Suppose doctors and care teams aren’t talking about the end of life and the possibility of death. How can patients and their families make informed, educated decisions about their care, especially in times of medical emergencies and life-altering diagnoses?

As a patient and as a person who will one day die, ask yourself the following:

  • Would you want to know if you were sick enough to die?
  • Would you want to prevent unnecessary treatments, prolonged hospitalizations, and possibly significant out of pocket expenses and financial toxicity if you were sick enough to die?
  • How would you feel if your care team knew that you were sick enough to die, but no one told you?
  • If you were sick enough to die, would you approach your care and life decisions differently?

If you answered yes to any of these, here are words of advice for you.

If your doctor and care team aren’t telling you all of the information you need to make an informed decision about your care, you or your carepartner must request to see your medical records.

  • Request to review your latest imaging report. Scroll down to the section called Impressions. This section is a summary of any findings made by the radiologist. Abnormal findings and recommendations for the next steps will be found here. If your care team isn’t discussing this section, ask the doctor what the impressions mean for your care and life.

  • Request to review your biopsy or surgical pathology report. The College of American Pathologists has resources to help patients and their carepartners better understand their pathology reports. Scan down to the diagnosis section. Review the diagnosis identified. Note any details on stage, grade, or tumor markers. These details will help guide treatment and care decisions. If your doctor and care team are not discussing the diagnosis details, ask what these details mean for your care and life.

  • Request to review your latest bloodwork. The American Association for Clinical Chemistry AACC) has resources to help guide patients and their carepartners understand their bloodwork. Scan the results for anything flagged as High (H), Low (L), or out of the reference ranges. Some reports may have an actionable interpretation of the results. If your doctor or care team does not address any items that have been flagged as out of the normal limits, ask them what that means for your care and life.

  • If you are being prepared for discharge from a hospital stay, ask your discharge planner and care coordinator what your diagnosis is, what your expected outcomes are, what the treatment plan will be, when your follow-ups are, and where you are being discharged to. If you have any concerns or questions, ask to see your medical records and request that your care team carefully review these details and what they mean for your care and life.

If you have received a life-altering diagnosis or find yourself in an emergency medical situation, don’t be afraid to ask if you are sick enough to die. Every patient has a right to fully understanding the answer to that question, whether it is no, yes, or somewhere in between. Doctors and care teams do not have to get death right. There is often no magic predictive algorithm. But they can get the conversations about end of life right. Patients and families can also help by getting the questions and discussions ready.

Medication Reconciliation: Scarier Than All of Halloween's Horrors

Medication Reconciliation: Scarier Than All of Halloween's Horrors

Adverse drug events (ADE) are a leading cause of patient harm and death worldwide. Almost 70% of patients’ medication histories noted upon patient admission to hospital have at least one error, with 30 – 80% of patients having a discrepancy between the medicines ordered in hospital and those they take at home. Here is one patient example of the dangers and frustrations of poor medication reconciliation.

In preparation for an upcoming surgery, a patient & their carepartner followed up with all the patient’s care team and the patient’s primary care physician (PCP) to discuss the patient’s upcoming surgery & medications. The patient has multiple comorbidities with an extensive prescription history list that includes 30+ medications over their lifetime, with 20+ medications currently being actively taken on a routine basis. The carepartner accompanies the patient to help coordinate care and reduce friction due to language and health literacy barriers, hearing loss, and the complexity of navigating multiple comorbidities managed by numerous physicians across various health systems.

To prepare for these appointments and discussions, the patient and their carepartner printed out a copy of all the patient’s medications from their PCP’s patient portal. The patient and carepartner carefully reviewed the list of drugs and noted any discrepancies, such as over-the-counter (OTC) medications that were missing or prescriptions that were discontinued. Medications were discussed with each respective prescribing physician, including confirming their names, dosages, frequencies, their impact on surgical outcomes, and if any needed to be stopped in preparation for surgery. Upon completing all the follow-ups with the entire care team, this patient now had a comprehensive, up-to-date list of medications they deemed their Master Medication List.

The patient provided a copy of the Master Medication List with their new patient intake forms for their new patient surgery consultation appointment. The surgeon’s office was a private practice which currently does not have an EHR.

The following week, the patient & their carepartner went to a pre-admission testing appointment at the hospital for surgical clearance. An internist, who was not the patient’s regular PCP, reviewed all of the patient’s medications using pharmacy prescription records, not the copy of the Master Medication List that was provided by the patient that was also just given to the surgeon. This created a tense and frustrating situation as the patient felt ignored and not heard.

The internist also said she could not “see” the list of medications that was confirmed with the surgeon at the surgical consultation because they don’t send that information to the hospital even though the doctor is affiliated with the hospital and would be performing the surgery there. The patient and carepartner were bewildered and now even more concerned.

This is a significant workflow, interoperability, & patient safety concern.

In the days before surgery, the patient received numerous calls from the hospital and surgical team. Many of the calls reviewed prescriptions using the outdated prescription history files, not the patient’s curated master list. No one was willing to start with the patient’s Master Medication List or hear the patient’s concerns. At this juncture, the patient & carepartner were gravely concerned about safety & communication.

Upon being admitted into the pre-surgical unit on the day of surgery, the medication reconciliation chaos resumed.

A pre-operative nurse pulled up the medications, referring to the historical, outdated prescription history list.

The carepartner needed to frantically pull out notes while the patient was being prepared for surgery. Thankfully the carepartner had a copy of the patient’s Master Medication List on hand to help facilitate the process.

The nurse, patient, & carepartner were interrupted during the medication reconciliation process multiple times by PAs, surgical consent forms, a visit from anesthesiology, the surgeon, & security picking up the patient’s belongings for storage. The interruptions made it more difficult for the nurse, patient, & carepartner to correct all the information. An additional challenge was that the nurse referred to many drugs by a different name than the patient and carepartner understood. The nurse may have been referring to medications by their generic drug name while the patient and carepartner, in some cases, were accustomed to the brand or trade name. Now the carepartner was also trying to furiously Google drug names to be sure that they were correct.

In addition to working through the list, the nurse asked:

  • what medications the patient did and didn’t take the morning of surgery?
  • what time the patient took the drugs that they did take?
  • what medications were temporarily discontinued in preparation for surgery & when?
  • what medications was the patient no longer taking in general?

At this point, everyone at the pre-op bedside was incredibly frustrated.

The patient was overwhelmed & panicked that there would be a medication error, the anxiety was exacerbated by the fact that the carepartner could not be at the bedside post-operatively due to strict COVID19 protocols. All of this took place moments before the patient needed to be wheeled in for a complicated surgery with many potential risks and anticipated difficult recovery.

This level of chaos and disorganization can be substantially improved and harm reduced if patients and carepartners are:

  • coached about the importance of medication reconciliation
  • guided as to how to create their Master Medication List
  • recognized as essential contributors to their safe, well-coordinated care.

With the cultural shift from paternalistic to participatory medicine, patients and their carepartners want to brief their medical team and be active contributors to patient safety & outcomes, to reducing costs and improving communication.

Patients should not be given paperwork and information unidirectionally. Care teams need information from the patient & carepartner to be successful in delivering safe care.

Patients & carepartners need to be better prepared with updated, safer ways of confirming & reconciling medications, especially pre-operatively and during any care transitions. Identifying medication discrepancies between what may be listed in the hospital or care team’s EHR and the realities of what a patient IS taking is a serious matter of patient safety to ensure proper, safe care.

Patients can and should prepare their Master Medication List, whether in preparation for an upcoming surgery or for continuity of care. This list should detail what medications, prescription or OTC, a patient is or is no longer taking. Patients should request their medical records from each member of their care team and confirm their current treatment plans to make their master list. There are several resources that patients and carepartners can use to help guide the creation of their medication master list, including from the Agency for Healthcare Research and Quality (AHRQ), the American Society of Health System Pharmacists (ASHP), and the World Health Organization (WHO). Programs such as Vials of Life may also help patients and their carepartners with medication reconciliation efforts.

Let’s reduce the number of medication errors, adverse drug events, poor transitions of care, and emergency room visits due to medication discrepancies by empowering patients and their carepartners with their medical records and guiding them on advocating for their health and safety. Horror stories should be associated with Halloween, not healthcare.

Over My Dead Body

Over My Dead Body

If you died today, who would you want to have access, or not, to your medical records? The Health Insurance Portability and Accountability Act (HIPAA) ensures that personal health information (PHI) is not wrongfully used, improperly accessed, or shared. Did you know that HIPAA also protects an individual’s right to privacy for up to 50 years after their death?

There are many reasons why loved ones may need access to a deceased individual’s medical records. Sadly, families frequently face difficult challenges in trying to access their deceased loved one’s medical records at a time when they may desperately need them the most. It’s both disappointing and concerning to see that discussions and prospective planning about access to one’s medical records after death are often not emphasized throughout life, especially during conversations about end of life care or end of life care planning.

In the United States alone, over 200,000 people have died from COVID19, with no end to the pandemic in near sight. Many of these individuals received care at the hospital, with some patients hospitalized for weeks in intensive care units, receiving specialized care while on ventilators. Families are now receiving astronomical bills for outstanding balances while grieving the death of their loved ones. Some families have tragically had more than one family member die from COVID19. In order to carefully review medical bills as well as potentially appeal insurance denials, families need access to all medical records detailing their deceased loved one’s care. Families may face push back and information blocking as they seek to request access to their deceased loved one’s PHI due to healthcare delivery organizations’ (HDOs) staff uncertainties about HIPAA and lack of individual proper documentation.

The reality is many individuals do not have estate plans, wills, a designated personal representative, an executor of an estate, or power of attorney. A vast majority of the general population, especially vulnerable populations, traditionally marginalized communities, and immigrant populations with limited English proficiency, do not even know about the existence of or have equitable access to proper estate planning, preparing a will, noting a power of attorney, or designating a personal representative.

Many frequently say:

  • These processes are strictly for the wealthy, not people like me.
  • I don’t have an estate or possessions of value to need estate planning.
  • I could never afford an attorney to prepare the paperwork to designate a personal representative.

The words we use matter and the words that are currently used to detail the processes, policies, and workflows dictating how to access a deceased individual’s medical records create a significant barrier for the majority of lay individuals and health citizens in our country.

Here are some other examples of why families may need access to their deceased loved one’s medical records:

  • They may want to better understand their loved one’s medical history, especially in the context of cancer, hereditary conditions, cardiac conditions, and other comorbidities.
  • They may be interested in passing down medical records as part of their family legacy.
  • They may need access to medical records in cases of medical errors or malpractice.
  • They may need access to help with the grieving process and to provide understanding and closure about their loved one’s last weeks, days, and moments of their life.
  • They may want to contribute records to ongoing clinical or scientific research, whether it is for COVID19 or other diseases, like cancer or rare disease.
  • They may need to handle administrative issues with respect to workman’s compensation claims, social security disability claims, or life insurance policies.

Whatever the reason may be, everyone should discuss what to do with their medical records when they die.

There are a number of ways that medical records of the deceased may be accessed. If a will is in place, a personal representative or an executor of the estate may be specified who will be authorized with right of access. In situations where there is no will or appointed personal representative, state laws may recognize a surviving family member through a hierarchy process as the personal representative.

The HIPAA Privacy Rule 164.502(g)(4) permits covered entities to “disclose a deceased individual’s medical records to family members and others who were actively involved in the care or payment for care of the deceased prior to death, unless doing so is inconsistent with any prior expressed preference of the individual that is known to the covered entity.”

Therefore, family members and others such as patient advocates, who had access to a patient’s medical records during their living years, designated by a HIPAA authorization form, are recognized to continue with those access rights after the patient’s death.

This is critically important! While there are clearly rules and policies that provide a framework for accessing the PHI of the deceased, this does not mean that things work smoothly and seamlessly. Expect to encounter problems and proactively prepare accordingly.

At minimum, everyone should specify in HIPAA authorization forms who should be granted access to your medical records, emphasizing in life and after one’s death. Including a copy of this designated individual’s legal photo ID, specifying their relationship to you, as well as providing their contact information can make all the difference in helping a hospital or HDO confirm with reasonable assurance your loved one’s role in your care and consequent right to access after death.

We all must plan accordingly so as to not risk having our loved one’s getting locked out from accessing our medical records after our death or to prevent our record’s from being accessed by family that normally would not have access. For example, many marriages and life partnerships end up in separation or divorce. A new spouse or life partner may be granted access but may not share that access with biological children. Loved one’s may be estranged. Many relationships in life are complicated. Death is often a strong catalyst for many tensions to rise to the surface that may unnecessarily complicate accessing medical records upon a loved one’s death.

With a thorough understanding of the many complexities that families routinely encounter in accessing their deceased loved one’s medical records, Unblock Health has thoughtfully and strategically incorporated simple, digitized solutions to best support all patients and their families to proactively prevent barriers and discrepancies in rightfully and legally accessing the deceased’s PHI. These solutions simultaneously support HIM professionals to ensure HIPAA compliance.

Reach out for a demo today to see how Unblock Health is the patient access digital front door healthcare needs now, in sickness and in health, even after death do us part.

Yours in Unblocking Health,

Shahid Shah and Grace Cordovano

Do You Want To Know A Secret?

Do You Want To Know A Secret?

As consumers, we are encouraged to review a copy of our credit report each year. What’s the big deal about reviewing one’s credit report regularly? Your credit report may directly impact your ability to secure a loan, obtain a credit card, lease an apartment, qualify to buy a home and the respective mortgage rates, purchasing or leasing a car, and even a job application. Checking your credit report can help with financial planning, committing to responsible financial and purchasing behaviors, as well as helping spot identity theft.An error in your credit report may impact your credit score, causing significant headaches. Federal law typically allows individuals to get 1 free copy of their credit report from each of the major credit reporting agencies, including Equifax, Experian, and TransUnion. Due to COVID19, individuals will be able to get free weekly copies of their reports online through April 2021. Upon receiving and reviewing a copy of one’s report, any incorrect information must be reported directly to the business that issued the account or the company that issued the report.

Want to know a secret?

Individuals also have the right to request their free annual medical report from the Medical Information Bureau, Inc, OPTUMInsight, Inc, and Milliman, Inc specialty consumer reporting agencies. While there’s an emphasis for consumers to request their credit report, there is very little in advertisement and emphasis about one’s right to also request an annual medical report.

A medical report is similar to a credit report for your health and health records. Your medical report may contain a combination of details, comprised of both medical and non-medical information, which describe you. Your medical report may list the details of health conditions, adverse driving records, criminal activity or arrests, participation in hazardous sports or hobbies, genetic history, sexual orientation, substance abuse, and details from your credit report. Companies in the business of health and life insurance use the information in medical reports to assess people applying for individual insurance.

In the same way that you should review a copy of your annual credit report, you should ABSOLUTELY request and review a copy of your annual medical report for accuracy, especially if you are applying for any insurance policies, such as life, health, or long-term care insurance.

Mistakes in medical report files may lead to higher premiums and out-of-pocket costs as well as give reason for insurers to reject potential coverage and policies. For example, a coding error made by a physician may lead to an incorrect diagnosis being reflected in your medical report, such as diabetes or metastatic cancer, leading to potential insurance policy denials. Fixing mistakes found in one’s medical report could lead to significant savings in health insurance policy premiums. Disputing errors in medical reports is of critical importance.

Have you requested a copy of your annual medical report? Request yours today from Medical Information Bureau, OPTUMInsight, and Milliman. Tell us about your experiences or tweet about them and tag us @UnblockHealth or use the official hashtag #UnblockHealth.

Yours in Unblocking Health,

Shahid Shah & Grace Cordovano