Susan's Breast Cancer Journey Part 2 - +StoryMD Health's Technology Empowers Her Personalized Health Journey

<p><a data-tabindex-counter="1" data-tabindex-value="none" href="https://storymd.com/story/Kq2Wwa9c4A-susan-and-her-golden-doodle-kookla" tabindex="-1">Part 1</a> of this series chronicled Susan Tsiaras’s breast cancer journey from her point of view. Moving forward, Part 2 offers a visual representation of Susan’s institutional patient portals juxtaposed with her journey recorded in the +StoryMD Health platform. Susan had the unique opportunity to use the alpha version of +StoryMD Health as her husband is the founder and CEO of StoryMD. Susan’s experience makes for an excellent case study of how the standard institutional patient portal model has fallen short, not satisfying the need for personalized guidance, both informationally and administratively. </p> <p>The current institutional patient portals are not without their benefits, but they are mostly geared toward administrative requirements and the management of the patient rather than the enlightenment of the patient. Despite being designed to make interaction with your health record as simple as possible, patient portals intimidate and confuse rather than empower and inspire. The failings of these institutional systems do not lie at the door of individual hospitals; they are a generalized issue that can be traced back to software developers who were primarily charged with satisfying government mandates. These legacy technologies look more like digital filing cabinets than tools for personal health literacy, which is lost among the undecipherable clinical jargon and admin-focused features of forms, billings, and calendars.</p> <p>With one of the largest coded medical libraries in the world, StoryMD, via +StoryMD Health, has created an advanced patient portal that intelligently maps its beautifully designed AI-driven library to your health record by dynamically curating all the information you need to navigate every facet of your journey. This is the foundation through which StoryMD is launching the next generation of personalized advanced patient portals. It empowers the patient by serving as a digital hand-holder that imports all your clinical and wearable data into a single platform and manages you from conception to advanced age, transforming your splintered and siloed medical records into a holistic clinical story and personal digital diary that you can understand and act on. </p> <p>The tools and features that transformed Susan’s Journey will be available to the public in the summer of 2024. Stay tuned for Part 3 of this series to explore the +StoryMD Health • Personal Health Journey platform that will be available to everyone.</p> <h2>Theme 1: StoryMD’s Large Language Model is Optimally Coded to Translate Your Medical Records into the Story of You</h2> <p>StoryMD’s massive coded library is the epicenter from which +StoryMD Health maps relevant content directly to a patient’s clinical and wearable data, compiling all their information into their personalized +StoryMD Health application. This information goes beyond the traditional Electronic Health Record data, which only archives your clinical results. StoryMD’s proprietary AI-driven StoryBlock technology maps, tracks, and explains relevant information on patient inputs on topics such as sleep, pain, emotional states, and reviews of your healthcare providers and institutions.</p> <p>On her journey, Susan’s northern star was the StoryMD Breast Cancer Journey library, an encyclopedic, multimedia resource that guided her through breast cancer types, biopsy, surgery, chemotherapy, reconstruction, and so much more. With her data plugged into her +StoryMD Health Personal Health Journey (PHJ), all the relevant content was automatically sourced from the library on her behalf.</p> <figure>  <img alt="" height="1239" src="https://cdn.storymd.com/optimized/LA1Zn5xuQo/original.png" width="900" /> <figcaption><strong>Image 1</strong></figcaption> </figure> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/VdKxGLeSwq/original.gif" width="900" /> <figcaption> <p><strong>Image 2</strong></p> <p><strong>COMPARE:</strong> Memorial Sloan Kettering Cancer Center information on breast cancer (<strong>Image 1</strong>) vs the breast cancer information found in StoryMD's Breast Cancer Journey and the Ultimate Guide to Your Breast Cancer Journey HealthJournal (<strong>Image 2</strong>) <em>Source: StoryMD and Alexander Tsiaras</em></p> </figcaption> </figure> <h2>Theme 2: Centralizing all medical and wearable data under one system overcomes fragmented information from multiple patient portals</h2> <p>Although Susan had the best of both worlds through top-tier care at NYU Langone and MSK, she had the harmony of none: different components of her critical health data were isolated in different hospitals’ patient portals, on top of the one she was using for her primary care doctor, so information had to cobbled together from three sources. +StoryMD Health eliminated this fragmentation by allowing her to “plug and play”; that is, taking the very same data she received through her three patient portals and putting it into her +StoryMD Health application, which then translated the incoherent mess of clinical jargon and wove the data into a holistic story of Susan. </p> <figure>  <img alt="" height="517" src="https://cdn.storymd.com/optimized/Wdx6wz1ieA/original.jpg" width="900" /> <figcaption><strong>Image 3</strong></figcaption> </figure> <figure>  <img alt="" height="741" src="https://cdn.storymd.com/optimized/JA0y8yjFOo/original.jpg" width="900" /> <figcaption> <p><strong>Image 4</strong></p> <p><strong>COMPARE: </strong>Three patient portals that Susan was using from other hospitals (<strong>Image 3</strong>) vs +StoryMD Health dashboard, timeline, and information library all accessible in one location (<strong>Image 4</strong>) <em>Source: StoryMD and Alexander Tsiaras</em></p> </figcaption> </figure> <h2>Theme 3: StoryMD’s StoryBlock technology automaps their AI-Powered Library and Transforms Clinical Jargon into Context-Rich Information</h2> <p>Biomarkers (lab reports) in the patient portal are starved for contextual information, rarely telling you anything more than whether some meaningless acronyms are “high” or “low”, which, once again, does not inherently indicate whether something is an issue. By contrast, plugging the same data into +StoryMD Health unlocked detailed, plain-language information covering the details of what every biomarker and their results meant and why they were relevant, the potential issues of abnormal results, and an opportunity to add notes. There are also links to articles covering related topics, allowing you to expand your knowledge with relevant material. </p> <figure><img alt="" height="563" src="https://cdn.storymd.com/optimized/JdPvNkMtjA/original.jpg" width="900" /> <figcaption><strong>Image 5</strong></figcaption> </figure> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/YqGDOD8H1A/original.gif" width="900" /> <figcaption> <p><strong>Image 6</strong></p> <p><strong>COMPARE:</strong>  Complete Blood Count Panel from the Memorial Sloan Kettering patient portal (<strong>Image 5</strong>) vs Complete Blood Count Panel from +StoryMD Health (<strong>Image 6</strong>) <em>Source: StoryMD and Alexander Tsiaras</em></p> </figcaption> </figure> <p>Although patient portals usually have a patient information section, you often get the likes of what Susan experienced: a longitudinal study on one of her biomarkers that didn’t provide any context as to what this biomarker does or why it’s relevant; it just added more questions than answers. This is an excellent example of how the patient portal technically shares some kind of information with the patient but fails to genuinely educate them. StoryMD’s presentation of the same longitudinal data is highly interactive by comparison, with detailed explanations of the meaning of the trends.</p> <figure><img alt="" height="563" src="https://cdn.storymd.com/optimized/8dnbK2zFvd/original.jpg" width="900" /> <figcaption><strong>Image 7</strong></figcaption> </figure> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/voJXkXVSvq/original.gif" width="900" /> <figcaption> <p><strong>Image 8</strong><br/> <strong>COMPARE:</strong> Longitudinal view of platelet test from Memorial Sloan Kettering patient portal (<strong>Image 7</strong>) vs longitudinal view of platelet test from +StoryMD (<strong>Image 8</strong>) Health <em>Source: StoryMD and Alexander Tsiaras</em></p> </figcaption> </figure> <p>While undergoing chemo, Susan was prescribed prochlorperazine to manage nausea and vomiting. The information offered on her patient portal about the drug was minimal, — note the comment that is cut off mid-sentence without explanation. Despite the array of medications that Susan was offered, this was bizarrely the only one for which she received information in the medication category. Over on StoryMD, she got a comprehensive explanation of all her medications: their classification and contraindications, potential interactions and risks, and a list of possible side effects.</p> <figure><img alt="" height="563" src="https://cdn.storymd.com/optimized/JdPvNvNijA/original.jpg" width="900" /> <figcaption><strong>Image 9</strong></figcaption> </figure> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/PqELkLjF1d/original.gif" width="900" /> <figcaption> <p><strong>Image 10</strong></p> <p><strong>COMPARE:</strong>  Information on the medication prochlorperazine in the Memorial Sloan Kettering patient portal (<strong>Image 9</strong>) vs information on the medication prochlorperazine in +StoryMD Health (<strong>Image 10</strong>) <em>Source: StoryMD and Alexander Tsiaras</em></p> </figcaption> </figure> <h2>Theme 4: Patient Portals Offer Minimum Standards of Administrative Features and Patient Health Literacy</h2> <p>Having an overview of your many appointments and key dates is an invaluable organizational tool for patients, and patient portals offer reminders to help you stay on track. Choosing your words carefully in healthcare is part of the job, however, as the wrong ones can trigger panic and send patients into a spiral. Few words pull this off quite like “procedure”, yet here it is unceremoniously dumped in Susan’s appointments with no information about what the procedure is or a firm schedule of when it’s going to happen. The ominous red writing for “TBD” is a nice touch.</p> <figure><img alt="" height="563" src="https://cdn.storymd.com/optimized/1dmEkLwtLd/original.jpg" width="900" /> <figcaption><strong>Image 11:</strong> Memorial Sloan Kettering patient portal showing an upcoming procedure, however, the type of procedure is not listed <em>Source: Alexander Tsiaras</em></figcaption> </figure> <p>There’s useless…and then there’s offering a service without contact details. Patient portals are often just a dead-end repository of admin-to-admin data from the patient’s POV, but these features in and of themselves are not worthless: their administrative value offers a convenient, singular location to organize calendars, appointments, and billing. Even then, her patient portal couldn’t get that right: in this image, they announced an offer to connect patients with a billing expert, and Susan hit a dead-end, finding nothing more than some information about hospitals and their opening hours. No names, no emails, no phone numbers.</p> <figure><img alt="" height="675" src="https://cdn.storymd.com/optimized/JA0y8DliOo/original.jpg" width="900" /> <figcaption><strong>Image 12:</strong> The Memorial Sloan Kettering patient portal offers a feature to talk to an expert in billing, however, when clicked on it just directs the user to come in person to the hospital to talk to someone <em>Source: Alexander Tsiaras</em></figcaption> </figure> <p>Theoretically, patient portals should provide a space for uploading information and sharing questions with your clinicians, lending opportunities for open dialogue that keeps healthcare providers aware of developments. Frustratingly, the messaging service just led to a pile of links with a confusing degree of categorization, making communication unnecessarily complicated.</p> <figure><img alt="" height="563" src="https://cdn.storymd.com/optimized/Qd9PGPpSgo/original.jpg" width="900" /> <figcaption><strong>Image 13:</strong> Memorial Sloan Kettering patient portal messaging system with multiple confusing links <em>Source: Alexander Tsiaras</em></figcaption> </figure> <h2>Theme 5: Incorporating Non-Coded Medical Processes for a Complete Understanding of Your Health Journey</h2> <p>Susan loves her oncologist and was always concerned that any negativity in her sharing this information would be associated with her. She emphasizes that the fault did not lay with the clinicians, and felt that most clinicians she engaged with were master storytellers. She noted that they have to exercise their storytelling skills every day by explaining to each patient the story of what is happening to their bodies, but added that they are given few tools at the point of care to aid them in improving their storytelling, while also saving time and increasing the impact of their storytelling on a traumatized listener. </p> <p>This was crystalized when she met her beloved oncologist to discuss treatment options for chemotherapy. Susan was presented with a monumental decision that had to balance the efficacy of one of three chemo treatment programs while trying to understand the short- and long-term side effects. Susan, along with her husband, asked questions of the oncologist as she diagrammed on a piece of paper the three options, which read like hieroglyphical clinical jargon. </p> <p>Later, Susan, her husband, and her son took the paper and turned to +StoryMD Health, interpreting the benefits and consequences of the three options. With a clear understanding of each option, Susan and her family figured out that it would be best to go for the least aggressive chemo protocol because there was little data on the effects of the harsher chemo options on a woman of her age, and there was no data as to whether any of cancer had spread. As it turned out, her sentinel nodes were clean, and the data showed that with the harsher chemotherapy she would have had a 1% chance of developing leukemia and a 2% chance of experiencing heart failure, along with the risks of loss of hair, severe side effects, and an undetermined amount of system degradation, which would have led to a reduced long-term quality of life. The choice, when laid out and understood, became apparent.</p> <figure><img alt="" height="685" src="https://cdn.storymd.com/optimized/kqrWjpWtZA/original.jpg" width="900" /> <figcaption><strong>Image 14</strong></figcaption> </figure> <figure><img alt="" height="563" src="https://cdn.storymd.com/optimized/VAzXKwKcMd/original.jpg" width="900" /> <figcaption> <p><strong>Image 15</strong></p> <p><strong>COMPARE:</strong>  Susan's whiteboarded treatment options for chemotherapy from her doctor (<strong>Image 14</strong>) vs information on the same chemotherapy treatments found in the StoryMD library (<strong>Image 15</strong>) <em>Source: StoryMD and Alexander Tsiaras</em></p> </figcaption> </figure> <p>If you’re living with cancer, almost no other news carries as much weight as when your healthcare team drills down to the grading and staging of the disease. Whereas the pathology report in Susan’s patient portal was confounded by clinical jargon that sent her anxiety through the roof, the same data when put through +StoryMD Health pulled in articles and multimedia information detailing the specifics of her case; for example, the HER2 gene and what the negative result meant. This rapidly enhanced Susan’s personal health literacy, and she was now able to understand the many nuances about her cancer, along with treatments, prognosis, risks, and more.</p> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/Qd9PGjYsgo/original.gif" width="900" /> <figcaption><strong>Image 16:</strong> Breast Cancer Grade test showing on Susan's +StoryMD Health timeline with links to additional information in the StoryMD library <em>Source: StoryMD</em></figcaption> </figure> <p>Hair loss is an iconic part of cancer treatment’s cruelty, and one that echoed trauma from the distant past for Susan. When she was a little girl, her hair didn’t fully grow out till she was three years old, and she would receive comments from strangers commenting on what a cute little boy she was, an experience that left a deep wound in her sense of femininity. The prospect of hair loss from chemo brought up those traumatic memories once more. “Scalp cooling” was suggested by her clinicians at MSK, and Susan excitedly found information and videos in the StoryMD library about this technology that could preserve her hair follicles and significantly reduce loss of hair. She jumped on the opportunity and was deeply relieved to find that it was fully covered by her insurance. </p> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/Nq4yDyYI7A/original.gif" width="900" /> <figcaption><strong>Image 17:</strong> Scalp Cooling procedure showing on Susan's +StoryMD Health timeline with links to further scalp cooling resources in the StoryMD library <em>Source: StoryMD and Alexander Tsiaras</em></figcaption> </figure> <p>Recovery after surgery requires effort from the patient, and effort requires proper guidance and motivation. Following her mastectomy surgery, Susan diligently performed arm and shoulder exercises to regain mobility, tracking her progress using colorful stickies. Over the next three weeks, she succeeded, and the post-it wall is now another chapter in her journey.</p> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/8dnbKbJUvd/original.gif" width="900" /> <figcaption><strong>Image 18:</strong> Post-Mastectomy Exercise note on Susan's +StoryMD Health timeline with an uploaded image of the sticky notes she used to help with the exercises and links to additional information on post-mastectomy exerices in the StoryMD library <em>Source: StoryMD and Alexander Tsiaras</em></figcaption> </figure> <h2>Theme 6: Accommodating the Subjective and Emotional Components of Your Story via the Digital Diary</h2> <p>The notes feature provides scope for a digital diary in which Susan could record her thoughts and feelings on treatments, healthcare professionals, critical meetings, and more. Here, she could reflect on the emotional value of knowing scalp cooling was available through her insurance to help preserve her hair, or how she felt about different doctors — their empathy, support, and human touch, along with the level of confidence they instilled in her following a meeting. Over time, she was able to review her digital diary and observe the highs and lows that made her health journey into a unique story.</p> <p>As Susan made her way through different institutions, offices, treatments, and consultations, she naturally encountered many nurses, doctors, surgeons, radiologists, and so on. Similar to how we review restaurants and bars on Yelp, Susan was able to record her feelings on her interactions with these healthcare professionals using a scale to note her satisfaction. Susan noted the close bond she developed in her relationship with her oncologist and how much her warm and sincere support meant to her. Additional information on how to make the most of your interactions with your doctor is an added bonus.</p> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/1dmEkEeiLd/original.gif" width="900" /> <figcaption><strong>Image 19:</strong> Adding a doctor review to the +StoryMD Health timeline <em>Source: StoryMD</em></figcaption> </figure> <p>With a disease like cancer and all those medications used to counteract it, you’re going to face symptoms like fatigue, nausea, and disruptions to bowel movements. How these fluctuate over time can be recorded through rating scales on +StoryMD Health, which provided Susan with a standardized way to communicate the intensity of her experience and how it evolved over time.</p> <figure><img alt="" src="https://cdn.storymd.com/optimized/ZoBy0yDhvA/original.jpg" /> <figcaption><strong>Image 20:</strong> Three examples of Wong-Baker scales, as seen on the +StoryMD Health timeline, for nausea, diarrhea, and fatigue <em>Source: StoryMD</em></figcaption> </figure> <p>Cancer journeys are not just an endless series of doom and gloom; there are moments of beauty, kindness, and love that are as much a part of the tapestry and should be documented along the way. The simple things that make us smile played a big role in maintaining Susan’s emotional strength, as seen here with Kookla the thief who stole her beloved Mr. Blueberry plushy. Susan eats a bowl of blueberries every day, and Mr. Blueberry was thoughtfully gifted by her 23-year-old son Andreas after he read that this fruit is an excellent antioxidant. Susan has a ritual of giving Mr. Blueberry a kiss every morning and night to keep her spirits up (so long as she can get him back from Kookla, that is!).</p> <figure><img alt="" height="609" src="https://cdn.storymd.com/optimized/Rda5n55UXd/original.gif" width="900" /> <figcaption><strong>Image 21:</strong> A personal note from Susan on her +StoryMD Health timeline, including images of the plushie Mr. Blueberry and her dog Kookla <em>Source: StoryMD and Alexander Tsiaras</em></figcaption> </figure> <p>Upon finishing four months of chemo, Susan added this note when she returned home:</p> <figure><img alt="" height="1214" src="https://cdn.storymd.com/optimized/RoegZgQuaq/original.jpg" width="900" /> <figcaption><strong>Image 22:</strong> Another personal note and image about a thoughtlful gift from Susan's son that was uploaded to her +StoryMD Health timeline  <em>Source: StoryMD and Alexander Tsiaras</em></figcaption> </figure> <p>The Breast Cancer Journey library that played a pivotal role in Susan’s journey is one of the largest of its kind in the world, yet it’s only one of 20 cancer libraries hosted on StoryMD. These libraries are the ultimate guide to colossal diseases like lung, skin, kidney, liver, and ovarian cancers, and they are in the company of mountains of information covering any and every concern related to health and wellness you can think of. Far from being of service to just cancer, +StoryMD Health is available to anyone no matter what health journey you’re going through, and Part 3 of this series will explore the diversity of the technology’s applications.</p> <h2>More on Breast Cancer</h2><ul><li><a href="https://soulivity.storymd.com/journal/m8pv85nipw-storymd-health-your-personal-health-portfolio" target="_blank">+StoryMD Health, Your Personal Health Portfolio</a></li><li><a href="https://soulivity.storymd.com/journal/bmp88k3i6j-personal-health-records" target="_blank">Personal Health Records (Medical Records)</a></li><li><a href="https://soulivity.storymd.com/journal/qj358rb0am-health-literacy" target="_blank">How to Improve Your Own Health Literacy</a></li></ul>