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.

When Titles Tell Tall Tales, Patients Can Suffer the Consequences

When Titles Tell Tall Tales, Patients Can Suffer the Consequences

“55% of Telehealth Providers Frustrated With OVERBLOWN Patient Expectations”

I was disappointed to read an inflammatory statement/title without any details on exactly what “overblown patient expectations” are.

Digging deeper, this report from United Health Group states: ”Looking inward, providers saw similar value for themselves in telehealth. Asked how they would describe telehealth, majority of respondents (69%) used the word convenient. Another 28% described virtual care as frustrating.”

Sounds like we are talking about of the 28% of providers that described telehealth care as “frustrating” then 55% (of the 28%) stated that managing patient expectations for their virtual visit was their key frustration.

What does managing overblown patient expectations mean?

Digging deeper still, this executive summary from Optum:

  • Page 8 says 1 in 4 providers stated #telehealth was “frustrating” due to the level of care they can provide.

  • 55% of these providers stated they were frustrated by patients expectations of what can be done virtually. [Serious question: is it bad that patients expect more from their telehealth experience? Consumers in other industries have high expectations and they are welcomed and attempted to be exceedingly met. Isn’t this also a form of patient engagement?]

Are patients expectations of what can be done virtually really too high & “overblown” or is this a clear example of the friction that exists because patients are sick of poor workflows, lack of access to digital health technology, & high rates of patient administrative burden, and healthcare clearly lagging in customer experience compared to other industries?

I would love to learn more specifics about what the overblown patient expectations are and how we can help meet (and gasp) exceed them. Assigning stigmatizing, negative labels to patients does not solve problems or alleviate friction.

Curious to hear your thoughts.

Eliminating Patient Administrative Burden

World Cancer Day 2022: Eliminating Patient Administrative Burden

February 4, 2022 is World Cancer Day. Too many patients struggle with severe barriers to accessing the care they need. These barriers and delays in care are documented to result in poor outcomes, progressive, advanced disease, as well as inhumane grief, suffering, and death.

This is unacceptable.

All patients should have the right to access the care they need to obtain a proper cancer diagnosis and treatment plan.

All patients should have the right to access the information, tools, and technology they need to make informed, educated decisions about their care.

All patients should have the right to learn about all treatment options, including clinical trials, precision medicine, advance care planning, palliative care, and all end-of-life care options.

All patients should have the right to live their best life no matter where they are with their cancer diagnosis, in a culturally sensitive, and compassionate manner, free from stigma and judgment.

All patients have a right to be connected to peer health support so no one walks their cancer diagnosis alone.

All patients have the right to whole-person cancer care that prioritizes physical health, mental, emotional, sexual health, and spiritual aspects.

This World Cancer Day I think of all the people that I have had the honor of walking beside in my 20+ years of advocacy work who were stolen too soon by cancer. I can not unsee all the suffering I’ve witnessed due to our fragmented healthcare system.

This World Cancer Day I double down on being laser-focused to reduce, if not eliminate, the Patient Administrative Burden associated with cancer for ALL patients. If I can alleviate even an ounce of suffering, it is all worth it.

For more information on what you can do this World Cancer Day:

Loss of (Already) Limited Time

Loss of (Already) Limited Time

Patients diagnosed with life-altering, life-limiting diagnoses have a different outlook on life. That outlook may draw a line directly to one’s impeding mortality. Imagine having your anticipated life and time on this Earth cut drastically by an earth-shattering diagnosis, such as cancer or ALS. One’s remaining time should be maximized to the fullest. With the majority of messaging from healthcare’s stakeholders’ amplifying being patient-centered, patient first, and putting the patient at the center of their care, one would think living your best life with a diagnosis is the case.

Imagine instead that you are forced to perform the most mundane of tasks in the most inefficiently designed manners over and over again simply to get the very care you need. Imaging hitting barrier after barrier that impedes you from getting the care you need. This is the sad reality and what life is like for so many patients. Many patients exclaim it’s as if their time on this Earth doesn’t even matter.

It is unfathomable to believe that patients in these circumstances are forced to channel their energy and efforts into filling out forms on clipboards, tediously requesting medical records, fighting with insurance companies, faxing, hard copy mailing important forms and pieces of information, paying fee after fee for expedited mailing.

As if having an advanced cancer diagnosis wasn’t bad enough, here’s an example of the heavy lift that was required for one patient living with advanced cancer to prepare for their 2nd opinion appointment as their cancer is no longer responding to treatment:

  • 3 weeks of gathering critical medical records that were not in respective patient portals. The patient is still missing office notes, some imaging reports, and missing information on pathology

  • 100s of pages, requiring more than a ream of paper, printed, copied, 3 hole punched, and pieced together in a binder

  • multiple trips to various doctors, cancer centers, imaging facilities and other office front desks; numerous entities repeatedly refused to email records at patient’s request, plea, demand.

  • $19.55 in priority mailing fees to expedite this precious information to a cancer center of excellence that also has its own a patient portal

  • Over 50 hours in total wrapped up in this precious cardboard box.

  • Epic Share Everywhere doesn’t even big to scratch the surface here.

This is one tiny sliver of what I call Patient Administrative Burden.

This is the work a patient living with advanced cancer needs to do so they may get the care they need. In this case, it’s so they may schedule a 3rd opinion with an oncologist at a cancer center of excellence in NYC to potentially enroll in a clinical trial.

The patient is losing precious time. By turning a blind eye to Patient Administrative Burden, we give life-altering, life-limiting diagnoses a competitive edge every single time.

I’m committed to not only reducing the barriers that patients see in their care, but also removing suffering, and giving back time that can be better used for living life.

Surprise No More Surprise Billing

Surprise! No More Surprise Billing!

The cost of care and services that a patient may receive is one of the murkiest areas of healthcare. There’s no shortage of mind-blowing stories of exorbitant bills that people have received of surprise bills after an emergency room visit, surgery, or even childbirth. This New Year’s brought the dawn of a new day and (hopefully) the end of surprise billing.

Everyone needs to be aware of the No Surprises Act that went into effect on January 1, 2022.

Here’s an excellent resource from Centers for Medicare & Medicaid Services detailing the No Surprises Act: Take 5-10 minutes and read through it today.

Here are some high-level highlights directly from the CMS site:

How does the No Surprises Act protect me if I have health insurance?

If you obtain your health insurance through an employer, the Health Insurance Marketplace, or have a health plan you purchased directly from an insurance company, the No Surprise Act will:

  • Ban surprise bills for emergency services, even if you get them out-of-network and without prior authorization.

  • Ban out-of-network cost-sharing for all emergency and some non-emergency services. You can no longer be charged more than in-network cost-sharing for these services.

  • Ban out-of-network charges and balance bills for care like emergency medicine, anesthesiology, pathology, radiology, neonatology that may be provided by out-of-network providers who work at an in-network facility.

  • Require that doctors and healthcare delivery organizations give patients an easy-to-understand notice explaining that getting care out-of-network could be more expensive and suggest options to avoid surprise bills. Patients need to know that they are not required to sign this notice or get care out-of-network.

Here’s a sample of a new form that you as a patient may see at your health care encounters, called the Surprise Billing Protection Form:

What if I don’t have health insurance or am self-pay?

Beginning January 1, 2022, if you’re uninsured or you pay for health care bills out of pocket, you can request your doctors and health care providers to provide you with a “Good Faith Estimate” for the costs of your anticipated care. This Good Faith Estimate should be itemized and include details such as diagnosis and service codes and total expected charges.

Here’s a sample Good Faith Estimate:

Doctors and health care delivery organizations should offer additional support if patients need explanations over the phone or in person. Patients should keep Good Faith Estimates for their records and hold on to them to review against final billing. Should final billing amount to higher than $400 over the Good Faith Estimate, patients may be able to pursue disputing the charges by way of the provider-patient resolution process.

What if I have questions and need additional support regarding the No Surprises Act?

A No Surprises Help Desk is ready to answer your specific questions at 1-800-985-3059.

Support at the No Surprises Help Desk is available in languages other than English.

The No Surprises Help Desk can provide all pertinent information on the No Surprises Act in an accessible format, like large print, Braille, or audio, at no additional costs to patients and families.

Please share this with your communities. Patients & their families NEED to know about this!

Here’s some additional reporting to provide more context:

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.