Patient Track: Being good at makeup, didn’t mean I was well.
Disclaimers.
Professional Standards and Scope:
Credentials and expertise: Dr. Stephanie Michelle Nixon is a PhD-level Speech-Language Pathologist and consultant.
Educational purpose: The content in this series is shared for informational, educational, and advocacy purposes only.
No clinical relationship: Engagement with this content does not constitute medical advice, a clinical diagnosis, or the establishment of a patient-provider relationship.
Medical consultation: Always seek the advice of your physician or other qualified health providers with questions regarding a medical condition.
Personal Narrative & Data Integrity:
Designated Record Set: This series represents a personal, professional audit of my own legally obtained medical history and “Designated Record Set”.
Factual Basis: All clinical data points—including the 169.4-minute gastric emptying result —are pulled directly from my documented clinical records.
Advocacy Intent: My goal is to highlight systemic disparities in medical documentation and foster better clinical communication.
Non-Defamation: This audit is a critique of the content and quality of documentation and the patterns of clinical bias, rather than an attack on specific individuals or institutions.
A Note on Neurodivergent Baseline:
Contextual Accuracy: Observations regarding communication style, energy, or behavior (often labeled “manic” or “pressured” in my records) must be viewed through the lens of my documented, lifelong ADHD diagnosis.
A ‘u’ was added (AuDHD) as a late diagnosis a few years ago providing a key to understanding why so many providers saw ‘manic’ behavior where there was actually just a neurodivergent person managing a health emergency. We have to stop labeling what we don’t understand.
Which version of you is in your medical record? On the right are the labels found in my permanent charts—words like “typical,” “rushed,” “not sick appearing”, “well groomed”. On the left is the objective data my body was reporting at that exact same time.
Words have weight. After auditing my own medical charts across different institutions, it became obvious just how much weight those words carry—and how they can shadow a patient for decades. And let me say, words can hurt.
During an initial appointment years ago, a provider looked at me and said, “You look well.” My response came quickly: “I’m good at makeup.”
How many of us get up, put on our “mask” (a smile, our makeup, shallow breaths to avoid a cough), and go about our day? I know I did. I watched TikToks to improve my makeup skills while I was getting sicker. I didn’t want the world to see me looking as bad as I felt.
But do we really need to look as bad as we feel for a provider to believe the data? I once showed a provider a photo of myself before I put on my makeup that morning, just so she could see the reality of my physical state. Her response? “Why are you showing me this?”
Looking back, I realize that if a provider needs you to look “sick enough” to believe your symptoms, they aren’t the right provider for you.
Receipts
The Science: A specialist was “not convinced” I had a condition, despite a nuclear study providing a 169.4 minute gastric half-time – nearly double the normal limit.
The “Well-Appearing” Paradox: My chart once documented me as “well-appearing” and in “no acute distress” while my oxygen saturation was recorded at 65% at room air. (Note. The 65% was likely associated with PVCs.)
The “Performance” Label: My cough was described as something I “demonstrated” when I was actually navigating multiple bacterial respiratory infections (including … MAC and Staph).
The Missing “u”: My speech was labeled as “pressured,” a psychiatric term that completely ignored my AuDHD baseline (ADHD 1979 / Autism 2024; iykyk).
Audit Your Medical History
Have you ever found a statement in your records that felt more like a character critique than a clinical note?
What is one “label” a provider gave you that was the complete opposite of your reality?
How did it change the way you presented yourself at your next visit?
Provider Track: Would you want these words in your permanent record?
Disclaimers.
Professional Standards and Scope:
Credentials and expertise: Dr. Stephanie Michelle Nixon is a PhD-level Speech-Language Pathologist and consultant.
Educational purpose: The content in this series is shared for informational, educational, and advocacy purposes only.
No clinical relationship: Engagement with this content does not constitute medical advice, a clinical diagnosis, or the establishment of a patient-provider relationship.
Medical consultation: Always seek the advice of your physician or other qualified health providers with questions regarding a medical condition.
Personal Narrative & Data Integrity:
Designated Record Set: This series represents a personal, professional audit of my own legally obtained medical history and “Designated Record Set”.
Factual Basis: All clinical data points—including the 169.4-minute gastric emptying result —are pulled directly from my documented clinical records.
Advocacy Intent: My goal is to highlight systemic disparities in medical documentation and foster better clinical communication.
Non-Defamation: This audit is a critique of the content and quality of documentation and the patterns of clinical bias, rather than an attack on specific individuals or institutions.
A Note on Neurodivergent Baseline:
Contextual Accuracy: Observations regarding communication style, energy, or behavior (often labeled “manic” or “pressured” in my records) must be viewed through the lens of my documented, lifelong ADHD diagnosis.
A ‘u’ was added (AuDHD) as a late diagnosis a few years ago providing a key to understanding why so many providers saw ‘manic’ behavior where there was actually just a neurodivergent person managing a health emergency. We have to stop labeling what we don’t understand.
medical gaslighting and the importance of accurate, data-driven medical records for neurodivergent (AuDHD) patients." class="wp-image-967" srcset="https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-1024x1003.png 1024w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-300x294.png 300w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-768x752.png 768w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-1536x1505.png 1536w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-2048x2006.png 2048w" sizes="(max-width: 1024px) 100vw, 1024px" />
Clinical documentation is a record of pathology, not a character assessment. Yet, after auditing my own medical records, I found decades of “subjective” notes that had nothing to do with my physiological state and everything to do with a provider’s snap judgement and dismissal of my lived reality.
It doesn’t matter if a provider feels these words “justified” in the moment. Once they are in the patient’s chart, they become a permanent filter for every provider who follows.
The words on the black and white side minimize and dismiss both objective findings and my symptoms.
In the image above, a provider documented that my degree of disability ‘surpassed objective findings.’ In doing so, they failed to recognize my functional reality: I was a Speech-Language Pathologist unable to see my patients for 3 weeks after losing my voice to an ulceration on my vocal fold. When documentation focuses on ‘surpassing findings’ but ignores a total loss of vocational function, the clinical record is incomplete. We must document the patient’s life, not just the provider’s impression.
The Scope-of-Practice Gap:
I found repeated psychiatric judgments—labels like ‘pressured speech’ and ‘somatization’—written by specialists who were not psychiatrists or behavioral neurologists. Labeling a communication style as ‘pressured speech’ without establishing a neuro-informed baseline (AuDHD) isn’t just a misinterpretation—it is a specialist overstepping their scope to pathologize a natural speech rate instead of investigating physical health.
What they called “pressured”:
A Neurodivergent Baseline: If anyone had paused to ask, I would have laughed and told them that I had the words “SLOW DOWN!” in bold on every note for every presentation during my post-graduate education.
Physiological Distress: Rapid speech and “short rushes” are frequently associated with shortness of breath. Documentation that reaches for a psychiatric label while a patient is in respiratory distress is a failure of clinical reasoning.
Fluency Dynamics: As an SLP, I recognize these patterns as potential symptoms of cluttering among other speech and language disorders.
None of these clinical presentations require a mental health diagnosis. When we reach for mental health labels to describe a fast speech rate, we ignore the very real physical or fluency-based realities of the patient standing in front of us.
The “Incidental” Dismissal
I once had a specialist (not a gynecologist or GI) dismiss my appendectomy as “incidental” to my laparoscopy for Stage IV extra-pelvic endometriosis. When a pathology report confirms ‘Appendix – Endometriosis,’ that appendectomy is a diagnostic data point, not an ‘incidental’ event. Labeling it as such signals to every future provider that the patient’s surgical history—and their reported pain—is irrelevant.
The Receipts:
The Science: A 169.4-minute gastric half-time (normal is <90) was dismissed by a specialist who was “not convinced.”
The Paradox: A 65% O2 saturation reading was recorded alongside a note that I was “well-appearing”. (Note. The 65% O2 reading was likely associated with PVCs based on the other data in the visit.)
The Shorthand: A systemic crisis involving a 20-lb weight gain and pitting edema was labeled “long story typical for Stephanie”.
The Challenge:
The Mirror Test: If you were the patient, would you want a crisis described as “typical” for you?
Stay in Scope: If you aren’t a psychiatrist, why are you reaching for psychiatric labels to describe a patient’s communication? (Also, check with the patient. Had that provider asked me, I would’ve laughed and told her that my rate of speech has always been fast…in fact, I must actively think about it to speak more slowly.)
Watch for Bias: Literally watch for it. If you see a dismissive note from a colleague, don’t carry it forward. Check the data, ask the patient, and document the objective truth.
Let’s hold the record to a higher standard. How can we ensure our “Subjective” notes don’t do lasting harm?
In a world of sponsored “health tech” content, here is the truth:
I am a paying subscriber of Perplexity Pro ($20/mo) and a paying subscriber of the Guava Health Family Plan.
While I serve on the Guava Health Patient Advisory Panel, I do so pro bono (unpaid).
This review is not a promotion; it is a clinical audit. I’ve spent my own money on these tools because I am a “spoonie” patient, provider, and researcher searching for a way to make a complex life more manageable. (But for the record, I do accept cookies.)
The Dangerous Illusion of “All Your Data”
The biggest risk of Perplexity Health (Beta) is the illusion of completeness. Its marketing promises a seamless “Health Hub,” but my testing revealed a dangerous “blind spot.” Despite being connected to my EMRs, Perplexity ignored my most recent labs and defaulted to a T4 Free result from 2021 as my “current” status.
The Safety Warning: If a patient trusts Perplexity’s dashboard, they might miss key data and believe they are clinically stable when the AI is simply “ignoring” the last five years of their data because it didn’t index in a way the AI could add to your biomarkers.
The Guava Advantage: Guava understands that medical data is messy. Even when a provider doesn’t have a direct API integration, Guava allows you to upload the report. The platform doesn’t just “store” the PDF; it indexes and pulls that data into your biomarkers, ensuring your trends are accurate and complete (or as complete as the data it obtains via APIs and your uploads).
Data Latency Proof. Perplexity remained stuck in 2021 despite current data being physically present in the system.
The “Spoonie Tax”: Friction as a Barrier
Chronic illness management is often a full-time job. We use technology to save “spoons,” not spend them. Perplexity, however, added to that fatigue through technical friction:
The Quantity and Size File Wall
I could only upload 200 documents. As a person with chronic illness who has been on this earth more than say 40 years, that didn’t begin to cover even half of my documents. You might tell me, ‘Just upload the most important ones’ or ‘Import them from the provider’, well, I tried that.
The connection to my primary care provider’s office linked to her old facility vs. the current one despite having the correct address on file for her.
My dermatologist, hematologist, integrative medicine provider, endocrinologist, cardiologist, gynecologist, primary care provider, and gastroenterologist weren’t accessible via Perplexity. (And these are only a few of the providers whose data couldn’t be accessed by Perplexity.)
Note. Six of eight of the above aren’t accessible via Guava either, but I can upload those visit notes to Guava Health myself.
To only see 10% of the data can also limit seeing the big picture. So, I grouped the files using Adobe to upload them (after deleting each individual file that I had uploaded).
BUT if you’ve used AI to try to analyze data in large 150+ page files, you’ll know … it isn’t always easy. (Even Gemini tells me occasionally that my files are “too large”.)
The Administrative Demand
Then I had an interesting ‘conversation’ with Perplexity’s AI when I realized that despite syncing up with the API of one of my facilities with most of the lab data, it was missing specific data points (e.g., all Free T4 data after November 2021 despite that specific lab being drawn between 2-6 times/year.)
So I asked Perplexity Health’s AI where the labs are, and was told “You’re right that [FACILITY X] has them and that you uploaded them; the issue is that they’re not surfacing in the structured “labs/observations” stream I can see”. The AI provided several reasons for why those labs weren’t there:
They may be stored only as a scanned PDF/image of the ER report, not as discrete lab rows, so they don’t appear in the lab feed even though they’re in your chart.
The upload might be filed under “Media,” “Documents,” or an outside-records bucket that isn’t mapped into the lab/observation section my view is pulling from.
The interface that shares data from Facility X’s EMR to this aggregate view may not map ED lab panels from that date or that specific visit type correctly.
But as a patient, provider, or researcher, the issue for those of us using Perplexity Health is that those labs aren’t there, and even uploading them, doesn’t lead to them being added to the biomarker section of the site.
So when I asked Perplexity AI what I should do, it suggested that I call the hospital’s IT department to request they “re-index” my FHIR API mapping.
Fig. 2 Perplexity delegates technical labor to the patient; Guava automates the extraction through AI parsing.
Even when I provided the connections to the facilities and uploaded the records (labs and visit notes), which took A LOT OF TIME, I learned today from the Perplexity Health AI: “So even though those note sets exist in your health system, what’s flowing into this connection right now is the coded summary, not the full written note body”.
To get Perplexity Health AI to review the visit note (not the summary, the actual note), I had to reupload the visit notes to the AI side of the conversation so it could read those vs. the coded summaries.
With that in mind, Guava’s AI had me copy the line from the visit note that I wanted it to compare with my other visit notes. This is what Guava Health’s AI told me today: “I can review excerpts you paste here, but I can’t directly pull provider notes from your chart unless the app exposes them to me in this chat. If you want, paste the relevant sections”.
The Patient’s Reality
Asking a hospital’s HIM department to fix a third-party AI’s mapping is an exercise in futility. We don’t have the energy to act as unpaid data engineers for a Beta product that is already charging a premium. Also, what do you think the hospital system would say if I asked for this?
Help Desk Emails
I have emailed the help desk for Perplexity Health AI and Guava. Because I did so about the above issue with Perplexity Health AI at the suggestion of the AI after it realized it was missing significant biomarker data points, let’s address the difference.
Perplexity Health: AI Support Agent Sam emailed me back to thank me for my insights and saying that they forwarded my feedback about lab integration limitations, file upload limits, and suggestions to the product team. I sent the email April 14, 2026. I haven’t heard back.
Guava Health: This is one example of an email with the Guava Help Desk. I emailed Guava Health’s Help Desk and asked how to fix an issue when there were two sources for the same lab on August 7, 2025. On August 8, 2025, I received an email from Alex Yau, Founder and President of Guava Health to answer my question. He asked for a screenshot for an example, which I sent and he followed up with additional insight and added that he would forward it to his team to give more thought.
Note. Both Perplexity Health AI and Guava Health have discords. I am not in the Perplexity discord, but I am in the Guava Health Discord.
The Android OS Barrier
While iOS users have a native Hub, Perplexity is “desktop-primary” for Android users. Using a mobile browser to check your health data is clunky and lacks the seamless utility of a native app.
The Repository Advantage: DICOM, Quest, and GI Notes
Guava is a Source of Truth; Perplexity is a search window.
Imaging (DICOM): Guava supports actual X-ray, CT, and MRI image files. You aren’t just storing a “report”; you are carrying your entire imaging library in your pocket. (Note. You need to upload those, but, still.)
Medication Reconciliation: I manage 62 active medications. Guava allows me to merge and deduplicate them across providers. Perplexity was able to retrieve some medication lists from the facilities BUT some of those lists were outdated.
My understanding is that Perplexity Health AI integrates with Apple Health for medication management, but I use Android, so I cannot comment on that.
I can, however, comment on Guava Health’s Medication management:
Data Portability: The “Disability & Tax” Hack
The true power of a health platform is what you can do with the data.
The Guava Hack: I downloaded my encounter history from Guava and used Gemini (in thinking or data analysis mode) to generate a mileage CSV for my taxes and a total encounter count for other paperwork. Guava provided the “raw material” to simplify my legal and financial life.
Perplexity’s Failure: Because Perplexity couldn’t accurately aggregate my history, I question whether it could do so accurately.
I’ll talk more about this in another post.
Setting Health Goals in Perplexity
One of the most revealing disconnects in Perplexity’s “Health Hub” is the Health Goals feature, which feels fundamentally “un-Spoonie.” While the marketing suggests a personalized experience, the available goals are largely aspirational wellness targets—like “Improving sleep” or “Marathon training”—that assume a linear, healthy baseline.
For a patient managing chronic illness, these rigid targets are often inappropriate or even demoralizing, as they ignore the daily fluctuations in energy and capacity that define the “Spoonie” experience. In contrast, the Fitbit Beta with Gemini feels significantly more approachable; instead of assigning a generic wellness category, it begins with a conversation about your specific challenges and health conditions. This “Coach” approach allows the AI to adjust its insights to your actual reality, rather than forcing you into a “fitness enthusiast” mold that your body simply isn’t in today.
Taken from Perplexity Health AI. It felt like there should be an “other” option.
Auditing for Bias & The Privacy Trap
I decided to test Guava Health and Perplexity AI today on auditing visit notes for biased language from a specific former provider.
While Perplexity was helpful, I found that NotebookLM and Gemini were significantly better at finding subtle linguistic cues.
Guava Health had me copy and paste the lines from the visit note into the AI for analysis against my record, but the AI then gave me an excellent plain language overview of bias in the portion I provided it.
CRITICAL PRIVACY WARNING: Unless you have a signed BAA (Business Associate Agreement)—like Guava—BE AWARE that uploading sensitive records to any non-HIPAA compliant AI (e.g., Gemini via personal Gmail, NotebookLM attached to personal Gmail, ChatGPT, or Perplexity without the Perplexity Health piece) is only as secure as your cloud data/passwords/and more.
Final Verdict: Research vs. Management
Perplexity Health is charging a premium ($20/month) for a Beta product that requires the patient to act as a manual data entry clerk. It is for people who want to research a disease.
Guava Health is for people who have to manage one. Guava Health Premium is only $8 per month. And if your provider has a Guava Health Provider Dashboard and invites you to it, IT IS free for you. Guava Health also offers a free version to patients.
Use Perplexity if: You want a search engine for medical trends. (Maybe? But I still haven’t tested this out as much as I need to. I tend to use Google Scholar.)
Use Guava if: You need to manage medications, prepare questions for medical visits, quickly access provider notes, see overviews of your biomarkers, store your imaging, and have your data work for you in the real world.
COMING SOON:
How to get a copy of your evidence (certificate) of coverage
The Disability & Tax Guide: A step-by-step on using your medical data to navigate these two data heavy tasks.
The Provider Portal: How Guava helps your doctors help you.
Guava Tags: How I use custom tagging to find patterns in flares.
If you have questions about Guava Health, post them here!
Identification Note:Logos used for nominative fair use for critical review. Stephanie Nixon, PhD, CCC-SLP serves on the Guava Patient Advisory Panel pro bono. Review based on the April 2026 Beta of Perplexity Health.
The following post is based entirely on my personal experience navigating the DC Government CareFirst BluePreferred PPO Plan and its Pharmacy Benefit Manager, CVS Caremark.
I am a healthcare professional and a patient, not an attorney or an insurance broker. This is NOT legal or financial advice. While I make no guarantees about the results of using these methods, my goal is to share my knowledge, documentation strategies, and experiences so you can better advocate for your own health.
Any information from conversations with CVS Caremark or CareFirst comes from my notes taken during the calls in my ‘patient’s log’ as described in my blog. These notes were taken contemporaneously to ensure an accurate, time-stamped record of the instructions provided to me. All references to contractual rights are drawn directly from the governing CareFirst Blue Preferred PPO Evidence of Coverage Document.
Specific to the Certificate of Coverage (Evidence of Coverage), a CareFirst employee provided it to me when I was unable to obtain a copy from DCHR. If there is mismatch between the version I have and the version with DCHR, well that’s for another post. (Stay tuned.)
Please note: I currently have a formal grievance regarding this matter under active review with the District of Columbia Department of Insurance, Securities & Banking (DISB; DCID#: 2065134). I have also contacted the DC City Council and Mayor’s office.All regulatory violations discussed below are alleged based on my documentation, and I will provide an update once I receive a final disposition.
The Tech Black Hole: Where Prior Authorizations Go To Die
If your doctor tells you they are waiting on your insurance, and your insurance tells you they are waiting on your doctor, someone is lying. Actually, it’s probably the software.
I tracked a pattern across five medical specialties (including neurology, gastroenterology, rheumatology, and my PCP). Providers were submitting prior authorizations through a vendor portal called CoverMyMeds. The system would tell the pharmacy the request was “sent,” but the providers never received the questionnaires. After 48 to 72 hours, the system automatically closed the files for “no response”.
This is a de facto denial of benefits without clinical review, likely caused by a software defect. I realized something was off in December 2025 when I was still with Aetna, but I thought it might just be the facility.
When providers had the same trouble in January 2026 with the same result, I realized that didn’t fit. It seemed more “systemic”, and the only commonality across these situations was that the prior authorizations were being submitted through CoverMyMeds. When speaking with a CVS Caremark Sr Rep in February, I was told that providers and patients had been expressing the same frustration I just noted. Additionally, you can see more here in the reviews.
(DISCLAIMER: This is an observation based on a pattern of incomplete PAs for the same reasons and the reactions of providers who all indicated the same issue: They never received requests for the information.)
Clinical Absurdity and Medical Impossibility
What do you do when a senior representative at your Pharmacy Benefit Manager (PBM) suggests you ask your provider to give a 30-day prescription for a 90-day quantity of a medication?
I’ve been taking the same dose of a brand-name maintenance medication for over 20 years. Recently, my PBM, CVS Caremark, approved my brand medically necessary PA (2/27/2026) but restricted the system to only dispense a 34-day supply. (This changed to 30-days less than 12 days later.)
What followed was a masterclass in administrative gaslighting:
Excuse 1: First, they told me I just needed my provider to file a ‘maintenance exception’.
Excuse 2: Then, they told my provider that an exception didn’t actually exist. When I called CVS Caremark, a Senior Representative blamed the manufacturer, claiming they restrict the medication to 30 days. I addressed this odd statement as there is nothing on the manufacture’s website or the web indicating the recommendation was accurate*.
The “Solution”: Finally, the Senior Representative spoke with the Prior Authorization team again. Their solution? Have my provider submit a prescription for 180 Celebrex 200 mg capsules to be taken over 30 days.
* Note. That is 6 pills a day of a medication where the FDA safe limit is two. Also, while on hold on that date, I emailed the manufacturer, Viatris, and received the response below:
Screenshots in this image are from: -CareFirst BluePreferred PPO Certificate of Coverage (Plan Sponsor: Government of the District of Columbia) (Obtained via CareFirst) -Responses to medication PA requests from CVS Caremark -Notes from my conversations with representatives at CVS CaremarkI contacted Viatris directly to confirm they had not changed their prescription recommendations.
I was stunned. I pointed out that this sounded like “creative pharmaceutical benefits”—otherwise known as insurance fraud. The representative laughed.
I didn’t know what to say as I got off the phone.
I spoke with my amazing Health Advocate and PCP, and then dug into my hundred-page policy myself.
I found Section 10(a)(4), which explicitly allows a medication like mine to be classified under a “Maintenance Medical Exception” for a 90-day fill. So I’m unsure what rules the senior representative was looking at, but they definitely did not match the rulebook the CVS Caremark Resolutions Specialist saw on 2/27/2026.
Note. CVS Caremark was mentioned as the PBM also responsible in the filing. Because CareFirst writes the “rules” I put them as the primary group in the complaint.
Since that date, I have contacted DC City Council and Mayor Muriel Bowser via email. There are more issues than just the above, but I will explain how I did this in another post.
As of 4/10/2026
After an almost 1-hour call with CVS Caremark on 4/10/2026, a Senior Representative informed me that she could see the maintenance medication exception in my plan documents. At the end of the call, she said that the issue needed to be sent to “account management” and that such issues are often corrected after 5 business days.
I have not heard anything as of 4/18/2026.
The Patient’s Playbook: Protect Yourself
Insurance companies rely on your exhaustion. You must document everything and demand your legal rights.
Track Every Call: Stop scribbling on scrap paper. Use the free Google Form I created—my “Patient’s Log”—to track the date, time, representative name, and action items of every call. Evidence is the only thing that wins appeals.
Check Your EOBs: If you are on a PPO and see a sudden deductible applied to standard pharmacy claims, call your insurer, demand an “Accumulator Adjustment,” and report a “Plan Design Error.”
Never take a verbal denial at face value. You must read the actual rules in your Certificate of Coverage (COC) to catch their lies—just like a Resolutions Specialist pointed out the ‘Maintenance Medical Exception’ in my contract leading me to push a Senior Representative at CareFirst about the frustration I had actually…getting one. (i.e., I couldn’t.)
Patients and Providers: Never take a verbal denial at face value. Demand the policy in writing, contact the manufacturer if they are blamed, and report “creative pharmaceutical benefits” to your state insurance administration immediately
To do this, you must get a copy of your Certificate of Coverage (COC). This is the governing rulebook—usually over 100 pages—not the short “Summary of Benefits.”
Under federal disclosure standards (specifically ERISA), if you submit a written request to your plan administrator for your governing plan documents, they are legally required to provide them to you within 30 days. Failure to comply with this federal disclosure window can carry potential statutory penalties of up to $110 per day.
Stay tuned—because simply obtaining my COC from the DC Government (DCHR) has been an entirely separate battle. I have a copy, but not via DCHR, despite repeated requests.
🗣️ Please share this post and tag @MayorBowser, @CMCHenderson, and the DC City Council Committee on Business and Economic Development. We need proactive DISB market conduct audits, not just individual complaint responses.
Trademarks and Fair Use Notice: All company names, logos, and trademarks—including CareFirst BlueCross BlueShield, CVS Caremark, Viatris, and any brand-name prescription drugs (such as Celebrex)—are the property of their respective owners. Their inclusion in this post and associated images is for educational, informational, and advocacy purposes only and does not imply any affiliation or endorsement.
Have you ever spent hours on a call with a provider or insurance company and then when you call back you’re told they have no record of the call? If so, you know how exhausting self-advocacy can be.
Managing healthcare for yourself or your family shouldn’t require a law degree, but keeping a detailed “paper trail” is one of the most important things you can do when disputing a bill, fighting for a prior authorization, or coordinating care.
As a patient and provider, I know that advocating for care and coverage is hard enough. So I am sharing a tool I made for me and my husband in January 2026: A Healthcare and Insurance Communication Log. (See my last post for more information.)
This tool was made primarily for dealing with health insurance (including our pharmacy benefit manager).
What is it?
A simple, customizable Google Form that you can fill out on your phone or computer during or immediately after a phone call. Use it to track:
Date and time of the conversation
Who you spoke to
What you discussed
What your next steps (and their next steps) are
And more…
You can quickly reference the key information needed from previous calls by looking at the entries in the form: (e.g., name of who you spoke with, company they are with, and date/time of the last communication, what was said, etc.).
A Quick Word on Privacy: Share the Tool, Not Your Data
If you find this call log helpful, we absolutely want you to share it with your friends, neighbors, or online support groups! However, it is crucial that you share the tool safely.
Because your copied Google Form is tied directly to your personal Google account and your private spreadsheet, sharing your specific form link outside of your immediate family (more specifically those involved in your healthcare and health insurance decisions).
If you send someone your personal link to copy for their own use, you will accidentally give them access to your Protected Health Information (PHI) and private medical notes.
The safe way to share:
The safe way to share: If you want to recommend this tool to someone else, do not share your Google Form link. Instead, simply copy the web address (URL) of this blog post and send that to them! This ensures they can read the instructions and download their own clean, private template that is completely separate from your data.
Disclaimer:
The Short Version: (Simply put)
This is just a helpful tool: This tracker is a free organizational aid, not official medical or legal advice, and downloading it does not make you a patient of Nixon Speech and Language.
This tool does not set reminders for you.
You are in charge of your data: The information you type goes straight into your personal Google account, not ours. You are responsible for keeping your own account and passwords secure.
Be mindful of privacy: Free Google accounts are not strictly protected by HIPAA (healthcare privacy laws). Please be careful about typing highly sensitive information (like Social Security numbers) into the form, and make sure you track strict insurance deadlines on your main calendar, too.
Share the tool, not your data. Share the link to the blog to help your friends, not your own form.
Longer version
Please read before downloading: This form is a self-help organizational tool provided courtesy of Nixon Speech and Language, LLC. It is not a medical device, a legal record, and does not constitute professional medical or legal advice, nor does it establish a provider-patient relationship. Do not rely solely on this form for critical deadlines. By downloading this template, you acknowledge that you are the sole owner of the data entered and assume all responsibility for securing your personal Google account. Standard, free Google accounts are generally not HIPAA-compliant environments, so please exercise caution when entering highly sensitive Protected Health Information (PHI).
By downloading this template, you acknowledge that you are the sole owner of the data entered and assume all responsibility for securing your personal Google account. Standard, free Google accounts are generally not HIPAA-compliant environments, so please exercise caution when entering highly sensitive Protected Health Information (PHI).
How to set it up
Make your copy: Click the link at the bottom of this post and select “Make a copy.”
Customize your form: Open your new form and edit the placeholder text.
Change the “Who was the call about?” question to list your specific family members.
Update the “Which organization did you contact?” question to list your main contacts (e.g., Blue Cross, Aetna, CVS Caremark).
Publish the form. Be sure to copy the link after publishing for your use.
Save it for easy access:
Fillable form: Bookmark the link to your fillable form on your computer (in Google Drive), or save it to your phone’s home screen so you can have it ready to complete during your next call.
Bookmark the file used to create the fillable form: This is where you’ll find all your call logs. You can print (or PDF) specific responses or export all responses to sheets.
Be sure to hit submit when you finish the call. If you don’t, your call log won’t save.
💡 Pro-Tip: Make it a Household Effort!
If you share healthcare duties with a spouse, partner, or adult child, you can use this single form to track everyone’s calls in one central place!
Once you have copied the form to your Google Drive and customized your family’s names, simply click the purple “Send” button at the top right of the screen. You can email the link directly to your partner, or copy the link and text it to them.
Have them save that link to their phone’s home screen. Now, whether it’s you calling the PBM about a prescription or your spouse calling the provider about a bill, all of your notes will feed into the exact same spreadsheet. No more asking, “Wait, what did the insurance rep tell you yesterday?”
The following applies only to those you want to share access to protected health information: If they need to be able to reference all calls for your household/family, be sure to share the backstage link AND fillable form.
📱 Make It an “App” on Your Phone
The easiest way to use this log is to save it directly to your phone’s home screen. That way, you don’t have to dig through your Google Drive every time you make a call.
First, get your fillable link: Open your form on your computer, click the purple “Send” button at the top right, click the link icon (the little chain), and copy that link. Email or text that link to your phone, then follow these steps:
For iPhone (Safari):
Open the link on your phone using the Safari browser.
Tap the Share icon at the very bottom of the screen (it looks like a square with an arrow pointing up).
Scroll down the menu and tap Add to Home Screen.
Type a short name for it (like “Insurance Log”) and tap Add in the top right corner.
For Android (Chrome):
Open the link on your phone using the Google Chrome browser.
Tap the Menu icon in the top right corner (the three vertical dots).
Scroll down and tap Add to Home screen.
Type a short name for it (like “Insurance Log”) and tap Add.
Now you will have a shiny new icon on your phone right next to your other apps. Just tap it whenever you are on a call!
📂 How to View Your Call History (The form and spreadsheet)
Think of your Google Form like a restaurant. The shortcut you saved to your phone is the “Front Door”—it’s just the menu where you place your new order. To see the history of every call you have ever logged, you have to go “Backstage” into your Google Drive.
Here is how to find your notes:
Go to your Google Drive: On a computer, go to drive.google.com and log in with the exact same Google account you used to copy the template.
Open the “Backstage” File: Find your saved form (e.g., “Healthcare Communication Log”) and double-click to open it. This opens the Editor view.
Click the Responses Tab: At the very top center of the screen, click the word Responses (it is right next to “Questions”).
Create Your Master Spreadsheet: For the best view, look for the little green icon that says “Link to Sheets” (or “View in Sheets”) near the top right of the Responses section.
Clicking that green button will instantly generate a clean, organized Google Spreadsheet containing every single detail of every call you have ever submitted.
📄 Need Hard Proof? How to Save a Call as a PDF
If you are filing a formal appeal or need to prove exactly how many times you contacted your insurance company about a specific issue, you can export individual call logs as clean, printable PDF documents.
Here is how to do it:
Go “Backstage” into your form and click the Responses tab.
Instead of looking at the spreadsheet, click the Individual tab (located right next to “Summary” and “Question”).
You will see your form filled out exactly as you submitted it. Use the < and > arrows to flip through your history until you find the specific call you need.
Click the Printer icon at the top right corner of that specific response.
When your computer’s print menu pops up, change the “Destination” or “Printer” from your physical home printer to Save as PDF.
Now you have a professional, timestamped document you can attach directly to an appeal letter or an email to your provider!
Get the template
Ready to get organized? Click below to copy the template to your Google Drive:
Please read before downloading: This form is a self-help organizational tool provided courtesy of Nixon Speech and Language, LLC. It is not a medical device, a legal record, and does not constitute professional medical or legal advice, nor does it establish a provider-patient relationship. Do not rely solely on this form for critical deadlines. By downloading this template, you acknowledge that you are the sole owner of the data entered and assume all responsibility for securing your personal Google account. Standard, free Google accounts are generally not HIPAA-compliant environments, so please exercise caution when entering highly sensitive Protected Health Information (PHI).
By downloading this template, you acknowledge that you are the sole owner of the data entered and assume all responsibility for securing your personal Google account. Standard, free Google accounts are generally not HIPAA-compliant environments, so please exercise caution when entering highly sensitive Protected Health Information (PHI).
Remember, share the post, not your data.
By clicking here you acknowledge that you have reviewed the disclaimer.
Information provided in this post by, Stephanie M. Nixon, Ph.D., CCC-SLP, is provided in good faith. Nixon Speech and Language, LLC makes no representation or warranty of any kind, express or implied regarding the accuracy, adequacy, validity, reliability, availability, or completeness of any information.
Stop scribbling on scrap paper. Here is the exact system I use to hold insurance companies accountable (and keep track of what has been said).
In my last post, I talked about the importance of documenting every single interaction with your insurance company. But let’s be honest: when you are managing a chronic illness, working, or just living life, finding a notebook and a working pen while on hold is just one more hurdle.
My husband and I realized early on that we needed a system that was fast, shared, and impossible to lose.
Our solution? A simple Google Form.
It lives as an icon on our phone home screens. When we get on a call, we tap it, fill in the blanks while we talk, and hit submit. It automatically saves everything into a spreadsheet that we can search later.
Why This Works Better Than a Notebook
It Prompts You: You never forget to ask “Who am I speaking with?” because the form requires you to type it in.
It’s Collaborative: If my husband takes a call, I can see the notes instantly on my computer. No more “Did you call them?” arguments.
It Creates a Timeline: When you need to file a grievance (like I did), you just open the spreadsheet and copy-paste the entire history.
The Fields You Need (Steal My Form)
I created a free Google Form with these specific questions. You can copy this exact structure:
Patient calling about: (Checkbox: … Names of those in the household, etc.)
Date called: (Date picker)
Who contacted? (Checkboxes: Benefits, Care Management, CVS Caremark, HR, etc.)
Method of contact: (Checkboxes: Phone, Email, Secure Message)
Did I record the call? (Yes/No – Check your local lawsas many areas require you to ask permission to record.)
My Script: “I need to record this call so I have a record of what to do next. Do I have your permission to record?” Note. Be sure to note this to any new call participants.
Note: If they say “No,” I immediately ask: “Since you are recording this for quality assurance, can I request a copy of that recording for my records?” (This usually changes the tone of the conversation!)
Name of representative: (Crucial! Always ask for this first)
Reason for call: (e.g., Prior Authorization, Billing Error, Benefits Question)
Summary of call: (What did they say? What did you say?)
How long were you on the call? (This is important evidence for complaints)
Action items: (What did the representative promise to do? What do you need to do?)
Follow-up date: (When should you check back?)
Header for your form.Settings for the form. Some are personal, but this let’s me and Josh know who entered the data.I have the email addresses required by default and the same for questions. (You can set some as not required.)
How to Set It Up
Go to forms.google.com and click “Blank Form.”
Add the questions listed above.
Click “Send,” copy the link, and email it to yourself and your spouse/caregiver.
Pro Tip: Open the link on your phone, tap “Share” (iOS) or the menu dots (Android), and select “Add to Home Screen.” Now it looks and acts just like an app.
The Result
When my pharmacy billing nightmare happened, I didn’t have to rely on my foggy memory. I opened my spreadsheet and saw exactly who disconnected on me on January 29th, and exactly what “Curtis” told me on February 6th.
That data wasn’t just notes; it was evidence. And evidence is the only thing that wins insurance appeals.
Disclaimer: I am a Speech-Language Pathologist and person with chronic illness, not an insurance broker or attorney. This post shares my personal experience and is not intended as legal or financial advice.
Merriam-Webster includes the following in the definitions of progress:
“a forward or onward movement (as to an objective or to a goal) : ADVANCE”
“a gradual betterment especially: the progressive development of human kind”
“to move forward: PROCEED”
“to develop a higher, better, or more advanced stage”
Know history – diverse history. Use research to improve education and healthcare so we can move forward not backward. Image created by Dr. Nixon’s description provided to Adobe AI.
Imagine.
Pause. Imagine that it’s 1990. You are in a wheelchair. You do the same work as your peers, but you get paid less. You can’t go to a movie theater because there aren’t accessible seats.
Do we really want to go back to that?
That was life before the Americans with Disabilities Act of 1990 that includes Section 504. Section 504, the section being the one currently being challenged by attorneys general in 17 different states with Texas v. Becerra.
In an essay written in Time on February 19, 2025, Rebekah Taussig wrote:
“In many ways, Section 504 has operated as an almost invisible protection – easy to take for granted. And in doing so, we’ve been able to continue the fiction that disability is something that happens only to others. The undeniable fact is that every one of us will acquire a disability if we live long enough. Disability is an experience we can move in and out of over the course of our lives, and disabled people are the only minority group anyone can become a part of at any moment. Section 504 is not a law for “those people.” …
As with much of U.S. politics right now, Texas v Becerra feels like a reckless attempt to pull us back to a former time. But there is one crucial difference between 1977 and 2025. More than one generation of disabled children has grown up under the protections Section 504 provides us. And while the politicians are still reciting the same script, our revolutionary predecessors gave us a new story. We are a valuable part of our communities, we belong here, and we’ve been shown how to fight.”
It was because people were (and still are, just check Supreme Court Cases) treated differently based on their race, religion, national origin, (dis)ability, gender (and gender identity), and sexual orientation.
If you think that shouldn’t be a concern, just take a look at what Rep. Rich McCormick (R-Ga) said when asked about school lunches after Trump proposed a federal funding freeze that could affect nutrition support for children: “Before I was even 13 years old, I was picking berries in the field, before child labor laws that precluded that. I was a paperboy and when was I was in high school; I worked my entire way through”.
Use of the phrase “back in my day” to dismiss concerns
Just because something was one way in 1954, doesn’t mean it should continue – particularly when it comes to civil rights.
Disclaimer. This post is not medical or legal advice.
The information provided in this blog post is for educational and informational purposes only. It is based on historical research, analysis, and interpretation, which may be subject to varying perspectives and ongoing scholarly debate. While every effort has been made to ensure the accuracy of the information presented, I do not guarantee its completeness or infallibility. Historical accounts can be complex and nuanced, and my interpretations reflect my understanding of the available sources at the time of writing.
This blog post may also contain personal opinions and reflections on the historical events and figures discussed. These opinions are my own and do not necessarily represent the views of others. They are offered as a basis for discussion and further exploration of the topic.
Readers are encouraged to conduct their own research and consult multiple sources to form their own informed opinions. I am open to respectful discussion and feedback on the content of this blog post, and I acknowledge that historical understanding can evolve over time. Any errors or omissions brought to my attention will be considered and, where appropriate, corrected.
By reading this blog post, you acknowledge that you understand and agree to the terms of this disclaimer.
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