Blocking Access Through Hidden Dams

Blocking Access Through Hidden Dams

We are living in an environment where too many providers are pushing back against patients accessing their medical records and health information.

In my daily patient advocacy work, I am seeing an increase in doctors discouraging:

  • portal use
  • patients against reading new lab, pathology, or imaging results
  • signing up for a patient portal.
  • using apps to gather one’s health information.

Discouraging the use of patient portals and not offering access to portals and individuals’ information is harmful to patients, hinders the growth of the doctor-patient relationship, and directly causes inequities in care and access to care

Here is a powerful highlight from a recent study published in JAMIA,Disparities in Patient Portal Access and the Role of Providers in Encouraging Access and Use:

“Rates of portal use to view test results and message with providers were similar across racial/ethnic groups, whereas Black and Hispanic individuals were MORE LIKELY than Whites to use their portal to download or transmit information.”

It was noted that differences in access and use were attributed to disparities in whether a patient was OFFERED a portal and that provider encouragement significantly increased the likelihood of access and use.

We have work to do. We must stop fear-mongering and denying patients access to their health information. The last thing we need are hidden dams to access being built.

To help advance patient access to EHI, the Office of the National Coordinator for Health Information Technology (ONC) Cures Act Final Rule tasks developers of certified health IT to adopt standards-based application programming interfaces (APIs) to enable patients to access their EHI using apps by way of their smartphone or another device.

Read this excellent blog post, Disparities in Patient Access to Electronic Health Information: Insights from a National Survey, by Chelsea Richwine, Ph.D., also leading author of the study and JAMIA publication.

Patient Need-to-Knows The Information Blocking Rules

Patient Need-to-Knows The Information Blocking Rules

Around mid to late September 2022, I started hearing an uptick in questions from patients and their families about notices they were receiving from their health care delivery organizations and physicians’ offices about the “ability to access more or all of their health information without delay”. The Information Blocking Rules October 6, 2022 milestone was around the corner and hospitals, cancer centers, and physicians were attempting to communicate changes to prepare their patients for the anticipated changes.

For some more context, while the initial applicability date of the Information Blocking Rules was April 5, 2021, the Rules only applied to a limited scope of electronic health information (EHI) up through October 5, 2022. On October 6, 2022, this limited scope transitioned to the full scope of EHI as per 45 CFR 171.103.

Many patients were reacting with concern about the sentiments that were being conveyed:

  • “This change may be unsettling for certain patients.”
  • “You may not be able to understand all the information available to you.”
  • “This expanded access to your health information could cause anxiety, make you nervous, or may make the weekend stressful.”

I assured patients that they always had the choice of viewing their records in their portal or waiting to view them until their doctor could discuss them with them. However, patients and their families wanted to know more, had many questions about these new rules and regulations, and had no one to turn to at their doctor’s office, cancer center, or hospital for this dialogue.

This episode of Patient Need-to-Knows: The Information Blocking Rules is determined to fill in the knowledge gaps and support patients and families in their quest to better understand what they may expect concerning their medical records and their health information.

It is an honor to be joined in this discussion by an esteemed colleague and fierce Information Blocking Rules subject matter expert, Elise Sweeney Anthony, J.D. Elise is the executive director of policy at the Office of the National Coordinator for Health IT (ONC) where she leads ONC’s engagement on a range of high-priority federal policy efforts, including regulatory development, information blocking, and TEFCA.

In the opening segment, it is undeniably clear that Elise has an unmatched passion for all things patient access as she works at the intersection of health policy, patient access, and health IT. Elise has a powerful personal story of her experiences as a patient diagnosed with breast cancer and how access to her medical records made a difference in her care and patient experience. We tackle the crux of the Information Blocking Rules and the new landscape of information sharing. Listen in here as we discuss key topics, including:

  • What the Information Blocking Rules are and what do they mean for patients? Check out the Report to Congress on Health Information Blocking from April 2015, an excellent reference Elise shared that provides extensive background and history around information blocking.

  • What patients need to know about the latest abbreviation in health care: what is EHI? All listeners should bookmark for patient access, information sharing, and health IT. Check out Understanding Electronic Health Information after this webinar, paying close attention to what is NOT considered EHI at the very bottom of this reference.

  • What the big deal about October 6, 2022 is concerning the Information Blocking Rules. In addition to the wealth of information being shared in our discussion, bookmark the following Health IT Buzz Blog post from Steve Posnack, Deputy National Coordinator for Health IT at ONC: Information Blocking: Eight Reminders for October 6th.

  • Examples of differences patients can expect to see with respect to their medical records and health information. More information about United States Core Data for Interoperability (USCDI) may be found here and while you are at it, don’t forget to explore OpenNotes!

  • Advice on what patients and their carepartners should do if they think they are experiencing Information Blocking.

If you believe you may be experiencing information blocking, you may file your complaint using the ONC Information Blocking Complaint Portal.

If you are curious about the submissions that are reported through this Information Blocking Portal, check out Information Blocking Claims: By The Numbers, where individuals may get updated information on the number of potential information-blocking claims received, counts by types of claimant, and counts by types of potential actor.

We wrap our conversation with what benefits Elise hopes patients and their carepartners will see and experience in the hopefully near future as a result of the full implementation of the Information Blocking Rules (spoiler alert: the future of information sharing is bright!).

Listen to the complete discussion here:

Patient Need-to-Knows: ABCs of HIEs

Patient Need-to-Knows: ABCs of HIEs

If only there was a central repository of information that patients could access in their time of need….no, I’m not talking about the patient portal.

While a comprehensive, longitudinal medical record is still only a thing of day dreams, health information exchanges (HIEs) may be a close second. Here’s a bit more on HIEs from

This episode of Patient Need-to-Knows is all about these seemingly underground pipelines of patient data that exist across the nation that patients have NOT had access to. (Crazy, right?!) As a patient advocate, when I first learned about HIEs years ago, I was super excited, thinking this is a great resource for patients, especially the patients with the most complex medical situations where there were lots of medical records spread out everywhere. You can image my frustrations when I reached out to HIEs locally and found out THEY WEREN’T BUILT FOR PATIENTS TO ACCESS THEM. This was an incredible disappointment as patients really could benefit from access to HIEs.

I’m excited to introduce two incredible women and colleagues who are powerhouses in all things patient data access and leaders in the HIE space and are looking to change the future for HIEs.

Lisa Bari is the Chief Executive Officer at Civitas Networks for Health. Lisa previously served as the CEO of the Strategic Health Information Exchange Collaborative and as the Health IT and Interoperability lead at the Centers for Medicare & Medicaid Services’ (CMS) Innovation Center, where she led health IT policy for the Comprehensive Primary Care Plus model and helped author the CMS Interoperability and Patient Access rule.

Deven McGraw is a national expert on health data policy. She currently lead of data stewardship and data sharing at Invitae, a genomic medicine company that provides clinical genetic testing and helps patients gather their records for use in seeking care and advancing research. Previously, she was deputy director of health information privacy at the Office for Civil Rights and acting chief privacy officer at the Office of the National Coordinator of Health Information Technology when the Cures Act first passed.

Listen in here as we dig into:

  • why each of these fierce leaders does what they do at the intersection of health information, policy, & patient access?

  • what the heck are HIEs, what are they used for, and why don’t patients know about them?

  • the scoop on what Lisa and Deven are working on in the HIE world, including the Patient Centered Data Home and Cures Gateway

  • Lisa and Deven’s predictions about what role HIEs will play in the future of patient access and patient care.

When Efforts to Bridge the Digital Divide Fail, Don’t Blame Patients

When Efforts to Bridge the Digital Divide Fail, Don’t Blame Patients

The VA recently offered a program which issued devices to veterans to be able to take part in virtual visits; see the excellent overview from John Lynn. The full OIG report is here:

The goal of the program was to bridge the digital divide that existed for many veterans who didn’t have the right device or connectivity to receive virtual care. While the distribution of devices was somewhat successful, program goals had much room for improvement.

Questions that come to my mind from the patient and carepartner perspective about the (lack of) success of the program:

  • was a strategy co-created with VA patients & their carepartners who would be participating in this program to better understand specific patient unmet needs?
  • devices need tech-enabled human touch. I physically go to patients homes prior to their virtual visits to coach them through logging on, troubleshooting various platform updates, pop-ups, connectivity errors, & encouraging patients through their fear of “doing something wrong”. Usually after 3 such visits, I move to a text prior to the appt and text while appt is kicking off to confirm patient has signed on. Prerecording a tutorial video capturing the screen and steps of how to login goes a long way as a reference for the patient too.
  • was it assessed if patients had a carepartner that could help with logistics and troubleshooting; sometimes the carepartner can better drive the appt scheduling, appt prep, connectivity, and the appt conversation to support a patient that is too sick?
  • depending on the patient’s condition & level of carepartner support, patients benefit from pre-appt prep: a brief discussion on the PURPOSE of the scheduled appt, goals of care (short & long-term), and questions (i.e., what is keeping you up at night, what is frustrating you at the moment, etc).
  • are patients being coached through the use of their medical records, shown how to review them, supported in understanding them, encouraging them to review them for mistakes & reporting mistakes, coached through how to use the power of the health information to help guide their care? This is one of the most important pieces of the puzzle.
  • how was trust addressed & were steps included to build trust in the devices that were issued to patients? Many patients who were offered devices may be struggling with serious sensitive diagnoses & building trust is key.

From my review of the full OIG report, none of the above was done. Providing a device is not enough. Patients deserve better care, especially our VA patients who served our country.

We Can Reduce & Eliminate Patient Medication Errors

We Can Reduce & Eliminate Patient Medication Errors

Errors in patient medication data are a disaster and safety error waiting to happen, especially in cases where there are multiple comorbidities, chronic illness, life-altering, life-limiting conditions and in our elderly populations who frequently have dozens of medications to manage. As the primary carepartner to 2 disabled adults and the carepartner to a loved one with metastatic cancer, I can personally assure you that errors in medications can mean life or death and most definitely be the reason a loved one avoids the ER.

This article in Becker’s Hospital Review, entitled The Downstream Effects of Fractured Medication Data, highlights anxiety-inducing facts, including:

  • 85% of inpatient medication errors originate from med history collected during admission
  • Almost 1% of all medication errors result in an ADE-related readmission
  • 8 errors in med histories collected by nursing and hospitalist staff per high-risk patient
  • 70% of patients admitted through the ED have errors on home medication lists

Not only am I laser-focused on patients having access to their medical records so they can get the care they need, I can’t emphasize enough the importance of patients’ records being correct and up to date. This has been the driving force behind creating Unblock Health, a SaaS tool for healthcare delivery organizations, providers, and physicians to transform their patient access workflows (AKA goodbye fax machine, scanners, paper & clipboards, endless portal messages, phone calls, and in-person visits to the front desk) and help patients and consumers seamlessly request the information they need AND request corrections to these said records once they are in their possession.

The downstream effects of fractured medication data is gravely concerning. We must change that and we can together with Unblock Health.

Patient Need-to-Knows Data Exchange and Medical Records

Patient Need-to-Knows Data Exchange and Medical Records

Patients, their families, advocates, and consumers face vast gaps of information that they, unfortunately, are NOT connected to in the healthcare arena.

One of the most common frustrations I hear from patients and their families is:

"Why don't my medical records go where they need to go?"

Given the nature of our digital world, it’s a logical and acceptable question and frustration. To get to the crux of the matter, I turned to the best subject matter experts on all things health information exchange, interoperability, and medical records in my network.

This episode of Patient Need-to-Knows is bursting at the seams with information on all things health information data exchange and medical records. Dr. Steven Lane is a practicing primary care physician at Sutter Health who is passionate about improving patient care, public health and medical research by securely getting the right information to the right users at the right time in the right format with the right supporting functionality and workflows. Arien Malac is senior vice president of research and development at Change Healthcare, where he addresses high scale information exchange and improved care, improved health, and cost containment through the use of clinical data. Prior to that role, he was at the Office of the National Coordinator, as Coordinator for the Direct Project and the Standards and Interoperability Framework. Dr. Steven Lane and Arien Malac also co-chair the Information Standards Workgroup, a sub-committee of the Health Information Technology Advisory Committee (HITAC).

Listen in as we dig into:

  • the inside scoop on why they do what they do right now at the intersection of health care, policy, and data

  • why our medical records don’t simply “go” where they are supposed to

  • what the heck HITAC, USCDI, and ISA are and what they have to do with medical records

  • what special sorcery are data standards, who makes them, where on earth do they come from

  • what are some of the biggest policy changes that patients and families need to know about in 2022 with respect to their medical records

Don’t miss the specific advice on how patients, carepartners, caregivers, and advocates can get more involved in standards development and federal policy initiatives. The patient and carepartner voice is greatly needed. Listen in to see how you can help today.

The fun starts here: Patient Need-to-Knows: Data Exchange and Medical Records

Patient Need-To-Knows: Non-Clinical Uses of Medical Records & Pediatrics

Patient Need-To-Knows: Non-Clinical Uses of Medical Records & Pediatrics

The healthcare ecosystem largely focuses on clinical uses of health information and medical records data. Did you know that there’s a spectrum of non-clinical uses for medical records that ALL individuals should know about?

In the latest episode of Patient Need-to-Knows, healthcare futurist & rockstar advocate & caregiver, Erica Johansen and I talk about little known ways that individuals can use their medical records to achieve necessary, positive outcomes that are not necessarily clinical in scope. Patients and their carepartners do a great deal of work to ensure that they or their loved ones get the care they need. That care may not always be clinical, but may be specialized education, relationship management with various agencies and payors, or orchestrating legal affairs.

Erica shared her experiences as a primary carepartner to her son and their journey through pediatric cancer and survivorship.

She shared examples of the Patient Administrative Burden that she endures to ensure her medically complex son is safe and thriving and highlights the spectrum of non-clinical tasks that are critical. Examples of these Patient Administrative Burdens include:

  • Advocating for the patient in school
  • Managing a team of private duty nurses and nursing agency representatives
  • Managing relationships with insurance
  • Managing relationships with the State complex care programs
  • Coordinating travel arrangements
  • Auditing and reconciling supplies
  • Troubleshooting supply and equipment issues
  • Advocating for the patient in legal affairs

Listen in as we hone in on key uses of medical records in medically complex pediatrics.

Learn how having access to medical records decreases Patient Administrative Burden, both the physical work that individuals need to do so patients may get the care they need and the mental and emotional traumas people routinely encounter in health care.

Don’t miss the special announcement and reveal Erica has about how she found a positive way to channel the grief, exhaustion, and tolls of being a caregiver and advocate into an avenue for healing through a brand new (not-to-be-missed) non-profit, August’s Artists.

Patient Need-To-Knows: Non-Clinical Uses of Medical Records in Medically Complex Pediatrics:

Medical Records & Precision Medicine

Medical Records & Precision Medicine

June is the 10th Annual Cancer Immunotherapy Month hosted by colleagues at Cancer Research Institute (CRI). Working with a global network of researchers, supporters, patients, and advocates, CRI is funding the best scientists doing the most promising research.

You can learn more about the lifesaving potential of immunotherapy here:

IMPORTANT FACT : Did you know that immunotherapy is the fourth pillar of cancer treatment?

Talk to your doctor and care team about the potential of immunotherapy as part of your treatment planning discussions. It’s never too early to talk about the role of immunotherapy or to consider clinical trials.

Here are some other important tips to be aware of as we celebrate Cancer Immunotherapy month:

  • Request copies of your medical records so you can provide all the information to your care team and can answer all of your care team’s questions about your diagnosis, treatment history, pathology, biomarkers, etc. Having copies of your medical records also can help uncover gaps in your care. For example, if you are newly diagnosed with cancer, facing treatment complications, your treatment is no longer working, or you are facing metastatic/progressing disease, it’s important to understand what treatments you have already tried, what imaging and tests have been performed, and if your tumor has any specific biomarkers. It’s important to know if you have had any surgeries to remove tumor tissue or biopsies to see if the pathology department has left over tissue to run additional tests without the need to harvest more tumor tissue. Without your medical records, you are wading in the darkness of your cancer diagnosis with more uncertainty than necessary. Having a copy of your medical records can help you explore immunotherapy as a treatment option!

  • Ask for more information on biomarker testing; check out One Cancer Place and The Biomarker Collaborative.

  • Reach out to peer health support and disease specific advocacy groups for more information on immunotherapy, biomarker testing, questions on QoL; check out The Advocate Collaborative, an exceptional group of advocates from all different cancer disease states who are super connectors and subject matter experts across a broad spectrum of cancers and treatments.

  • Explore Cancer Research Institute (CRI) site for more information on immunotherapy and check out their clinical trial navigators for help with researching trials

  • Follow research based organizations like The Society for Immunotherapy of Cancer (SITC). SITC is a not-for-profit multi-stakeholder medical professional society whose mission is to improve cancer patient outcomes by advancing scientific research and application of cancer immunotherapy.

  • Learn more about immunotherapy through patient summits like the CRI Patient Immunotherapy Summits.

  • Get up to speed on the field of Precision Medicine; check out

Have your medical records handy when you reach out to these websites and groups so you have the information you need at hand if questions arise. This will help you connect to the care you need faster.

Patient Need-To-Knows: Working with Oncology Registered Dieticians

Patient Need-To-Knows: Working with Oncology Registered Dieticians

Patients need their medical records for a broad spectrum of things. Being a patient can take significant work to get the care one needs. This can include trying to figure out what to eat, or not to, when you have a particular diagnosis, have multiple comorbidities, and have a number of different medications.

One of the most common questions I hear from patients once they’ve started a particular treatment, such as chemotherapy, is, “What can I eat? Are there foods I should eat less of? How do I know if I need more of a specific nutrient?” Diet and nutrition can be very perplexing to navigate alone, especially where there are significant treatment-related side effects, such as diarrhea, nausea, vomiting, loss of appetite, mouth sores, and malnutrition. Diet and nutrition can also be extremely complicated in the context of a diagnosis such as heart disease, hypertension, diabetes, or advanced cancer. Imagine how challenging it may be to have multiple conditions, numerous medications, and not guidance.

A registered dietician may help.

Did you know that it’s helpful to have a copy of your medical records in order to work with a registered dietician? Registered dieticians may review patient medical records and use the data and information to tailor recommendations and individualize recommendations on all things diet and nutrition related.

Working with a registered dietician can help patients and their families get the most pertinent information they need to make decisions about their care and their nutritional goals. Having access to one’s medical records is an important step in collaborating with a registered dietician as they may review your diagnosis, treatments, past medical history, lab work and many other pieces of health information in order to craft an individualized nutrition plan. This is a critical piece of information that most patients and their families are rarely told about.

Ever wondered about what a registered dietician is, what they do, and why their work is so important, especially in oncology? Take a listen to this episode of Patient Need-To-Knows, as I talk to Chelsey Schneider, registered dietician and oncology nutrition subject matter expert.