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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: https://www.worldcancerday.org/about-us

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: https://www.cms.gov/nosurprises. 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: https://www.cms.gov/files/document/notice-and-consent-form-example.pdf

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: https://www.cms.gov/files/document/good-faith-estimate-example.pdf

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 https://lnkd.in/ePztdd4

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

pinktober

Pinktober

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

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

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

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

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

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

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

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

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

clinical-decision-support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HIPPA-Right-of-access

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

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

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

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA

what-message-are-you-sending

What Message Are You Sending?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You can just look on our website.”

[Click. Dial tone]

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

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA