Rare Chronic Illness in the Electronic Healthcare World

In 2016, I wrote this research paper for my graduate program at Virginia Tech. The professor asked me to publish it but that never came to fruition. The topic may be dry (there are even references and appendices!), but I poured a lot of my heart into the research because it was for someone I used to love. I want to share it so maybe some people will learn about an unusual chronic illness and so I don’t lose it in a late night attempt to remove this man from every aspect of electronic existence. It took a lot of work, and even dry work can be appreciated by some of us.

Executive Summary

            The patient is a middle-aged male with thyroid cancer, hypoparathyroidism, and a heart condition. This research paper discusses the experiences with the electronic health record (EHR) system of Scripps Medical Center in San Diego, California and the subsequent trials and tribulations of the currently used system as a patient with a chronic health issue. The good and bad experiences of this patient as detailed by this report are a glimpse at the impact electronic health record systems have on patients with long-term illnesses. Finding a way to increase the quality of health for patients through the proper development and implementation of Healthcare Information Technology can ease the strain of chronic illnesses on the family, friends, and first most, the patients. This report will discuss the results of my interview with the patient regarding his healthcare experience through the years. The report identifies the difficulties of this patient’s experiences with his personal health record management and healthcare management through his eight year journey. Suggestions will be made to increase patient autonomy, patient-doctor interactions, and overall healthcare experience through biometric patient identification, integrating patient monitoring systems into a patient’s EHR, patient reminders for appointments and prescription renewal, improved EHR system design, a proposed patient monitoring system, and digital support from others with the same chronic conditions.

Introduction

In 2015, a man stumbles into the hospital’s emergency room. He is incoherent, and leans heavily against the receptionist’s desk while tapping his right arm with his left fingers. The receptionist asks for his name and ailment. She repeats herself as he struggles to breathe, seemingly suffering from severe body cramps. A nurse sees his actions from across the room and rushes towards him. Just before she reaches him, he collapses.

The nurse takes the man’s vitals and rushes him into the back room, working to rule out conditions such as stroke or heart failure. While the nurse works, another nurse searches the man’s pockets for identification or any paperwork that would help them understand his ailment. Without identification of the patient, the process of determining what is physically wrong with him can take a long time- long enough to possibly damage his body further. As the two nurses work, another one walks by and recognizes the patient. She identifies him, and then pulls up his medical chart in the hospital’s Electronic Health Record System. With his health history readily available, the diagnosis is quickly made by the attending physician: hypoparathyroidism. He is immediately treated with the proper dosage of calcium and begins to regain control of his muscles.

In 2012, this man was my immediate supervisor. We had worked closely together for two years, spending sixteen hours a day trying to ensure our jobs stayed intact. Along the way, we morphed into friends as well as supervisor and subordinate. One day, he mentioned he needed to go to the doctor to get a lump in his throat checked out. He brushed aside my concerns and did not mention it again. Because I knew his personality and his extreme disregard for logistical events such as scheduling appointments and actually going to the doctor, I doubted he would be seen by a doctor. When he mentioned that the lump was discovered in 2008 and he had ignored it thus far, it became evident how insignificant he believed this lump to be. He would get around to getting it looked at by a doctor when it was convenient for him.

This paper discusses the implications of the patient’s diagnosis and the difficulties he has had with managing his health as an individual with thyroid cancer, hypoparathyroidism, and a heart condition. Because I am his friend, I know an improved EHR system in addition to an at-home patient monitoring kit for calcium levels would encourage more patient interaction, patient-centered care, and better healthcare management with a person as stubborn and unorganized as he.

Other Research

Chronic Disease Management

In the United States, 70% of deaths are caused by a chronic condition such as heart disease, cancer, and stroke (Zamosky, 2013). With such a high number of patients experiencing these kinds of health problems, doctors, from primary care physicians to specialists, are determining ways to best help patients manage their healthcare through the use of electronic health records that show a patient’s complete health history. If primary care providers and specialists alike share access to the same EHR for a patient, or if the facilities which the patient uses have interoperable EHR systems, then a patient’s electronic health record will have a complete picture of who is treating the patient and how they are approaching the management of a patient’s chronic disease. With Americans such as the patient in this report, there is not just one chronic condition to have a complete understanding of when treating a patient. One in four Americans under the age of 65 have more than one chronic condition, and that number increases to three in four Americans after the age of 65 (Multiple Chronic Conditions, 2016). As more Americans age and develop chronic conditions, it is extremely important for EHR systems to be interoperable so a doctor can view a patient’s EHR and be assured that the information is complete and accurate.

Currently, a lack in EHR system interoperability is challenging patients and doctors as patients try to get their records updated as they move between healthcare systems and as doctors try to fully understand a patient’s past health with incomplete records. Although incentive programs driven by Medicare and Medicaid and endorsed by the Office of the National Coordinator for Health Information Technology are in place to drive interoperability and meaningful use of EHR systems within hospitals, barriers such as timeliness and vendor replacements are causing interoperability to be lacking in most EHR systems (Achieving Interoperability that Supports Care Transformation: A Report of the American Hospital Association Interoperability Advisory Group, 2015). When EHR systems are not interoperable, patients become overwhelmed with additional paperwork and vender requirements to get their EHR records consolidated and complete.

Patient Monitoring Services

There have been multiple types of patient monitoring services that track a patient’s health data and upload it to an area of the internet for review. This type of monitoring can be for the patient’s personal knowledge of their working body, such as through a heartrate and activity tracker like the externally worn FitBit (See Appendix A). The data collected from personal monitoring devices such as an iPhone Health Kit is not uploaded to the patient’s EHR and thus is inaccessible to the doctor to produce a better picture of the patient’s health and level of activity. With personal monitoring devices like glucose testing meters, the information is displayed immediately to the patient and the patient makes personal medical decisions based upon the numbers produced. However, the numbers are also rarely uploaded to an EHR for the doctor to review them and to track the health of the patient over time. Some monitoring devices can be used for diagnostics, to catch an event that happens when the patient is sleeping or otherwise away from the doctor’s office, like the externally worn Holter device (See Appendix B). This information is available to the doctor’s office, alerts the doctor of any immediate issues, but the device information is not always uploaded to the patient’s EHR.

EHR systems are changing the way patients can view their health records and how doctors can track and treat diseases. If EHR systems have fully integrated patient monitoring systems like the FitBit, the Holter device, or blood serum chemistry monitor results that update into a patient’s record, doctors could more easily see trends with particular patients. Over time, the collected data of EHR systems and related patient monitoring systems could allow clinical decision support systems (CDSS) to provide evidence-based proof of why patient care should be handled a certain way. Some home monitoring systems have begun to integrate the data collected into the patient’s EHR record, but this capability is not available with every monitoring system or with every EHR system so many patients are not awarded the benefits of integrating their data and having their health history on file (ECG and Glucose Data: Collect them directly to Your EHR, 2014).

Data collection/data analysis/method of analysis/methodologies

An email was sent to the patient on July 9th, 2016 with a list of questions so I might better understand the journey his health had taken and how he felt his EHR record management was handled by the hospital and outpatient facilities during his ongoing eight year journey (See Appendix C). Our discussions of his health over the years have been in person, through Google chat, through email, and over the phone and Skype. I have listened to his medical concerns, his successes, and his failures. I will try to consolidate his medical journey from the past eight years below.

Lump Identified

This patient’s medical journey began in 2008 with a routine medical visit to his primary care doctor. The patient discovered a lump in his neck and went to a local imaging clinic to have the lump identified. During the computed tomography (CT) scan, a salivary stone was identified. Once the doctor identified the stone, he mentioned that there was another lump “worth getting checked out.” The patient ignored the lump until 2012, when he switched primary care doctors and went to a doctor within the Scripps Medical Center who determined the lump must be looked at immediately. He met with an endocrinologist to get a fine needle aspiration (FNA) biopsy (see Appendix D). However, the FNA biopsy has an inadequate specimen rate of 10-20% and the patient underwent two unsuccessful biopsies with three to five aspirations each before getting placed under anesthesia within a Scripps laboratory to ensure the aspirations provided an adequate specimen (Kim, 2008). The endocrinologist performed over 20 aspirations on the patient at this time. The specimens taken at this time were still inadequate so the endocrinologist decided to have half of the patient’s thyroid removed.

Thyroid Surgery and Hypoparathyroidism Review

The first thyroid surgery went well. Half of the patient’s thyroid was removed by an otolaryngologist (a surgeon of the ear, nose and throat) through a partial thyroidectomy and sent to be biopsied. One of the serious complications of thyroid surgery is the rare chronic illness, surgical hypoparathyroidism, which means the parathyroid glands, located near the thyroid, are damaged and can no longer regulate the calcium needed for the body to function by the release of the parathyroid hormone (PTH) (See Appendix E) (Hypoparathyroidism – National Organization for Rare Disorders, 2014). When the calcium levels in a person’s body drop, the parathyroids create more PTH, which causes the body to create more calcium. Inversely, if the calcium levels are too high, the PTH levels are decreased and the body slows the production of calcium. After the removal of any portion of the thyroid, a patient will be closely monitored to ensure his/her calcium and parathyroid hormone levels are within sufficient levels (See Appendix F). These blood tests are conducted during surgical recovery, and are ordered by the otolaryngologist to be conducted in the hospital’s lab once the patient has been released for at-home care. During surgical recovery, patients are orally given calcium and vitamin D to prevent hypocalcemia, or a decrease in calcium in the blood, in the days immediately following surgery (Sanabria, 2011). After the initial tests, it was revealed that the patient’s parathyroid glands were working properly and his body was capable of regulating calcium.

Cancer Diagnosis and Hypoparathyroidism

The biopsy of the patient’s thyroid came back as malignant. He was diagnosed as having a Stage 3 follicular variant of papillary thyroid cancer and would require immediate removal of the rest of his thyroid. The second surgery was performed by the same otolaryngologist. After the conclusion of the second partial thyroidectomy, the patient’s PTH and calcium levels were monitored and he was released. A patient’s calcium and PTH levels can take a few weeks after thyroid surgery to return to acceptable standards. This patient’s PTH levels were tested weekly, and showed that the patient’s parathyroids were unable to produce sufficient levels of PTH. The calcium levels in his blood were not high enough to control muscle function in his body.

Surgical hypoparathyroidism is a permanently disabling chronic condition that requires the patient to consistently take calcium and vitamin D to help their body’s muscles function normally. Vitamin D allows the body to properly absorb the calcium ingested by the patient. Without proper levels of PTH and calcium, the body begins to experience muscular spasms called “tetany”, extreme discomfort and tingling in lips, hands, and feet, difficulty walking or breathing, and a sense of “grogginess” in mental function (Lewis, n.d.). Oral calcium and vitamin D supplements help relieve these symptoms in the short-term, but long-term effects of hypoparathyroidism include kidney failure, basal ganglia calcifications (calcifications in the brain), neuropsychiatric derangements, and infections (Lorente-Poch, 2015).

Patients with hypoparathyroidism experience a decreased quality of life from having to take medicine hourly, from having to attend multiple appointments with endocrinologists and other specialists, and from having blood drawn consistently to track calcium and PTH levels. Keeping PTH and calcium levels consistent in the body require constant discipline in diet, restriction of physical activity, and a desire by the patient to stay healthy. This patient was required to maintain his calcium at a moderate level through oral consumption of calcium supplements, Calcitriol, which is a prescription form of vitamin D to help the body properly absorb calcium properly, and magnesium (Calcitriol: MedlinePlus Drug Information, n.d.).

Heart Failure

Because calcium levels in the blood dictate muscle control and function, experiencing an increase and decrease in levels over time can influence the function of the cardiac muscle (Marks, 2003). In 2014, after the patient’s second thyroid surgery, he began experiencing painful heart palpitations six or seven times per hour. After a referral to the cardiologist, he was placed on a Holter monitor, which is a portable electrocardiogram (EKG) recorder externally placed on the patient’s body for 24-48 hours (See Appendix B). The electrodes read the rhythm of the patient’s heart, record the rhythm for a period of time, and synchronize the recordings to a BlackBerry phone. If a cardiac event is particularly significant in nature, the Holter device will immediately send the EKG results to the doctor’s office and alert the doctor who is on-call of the patient’s current heart condition (Cardiac Event and Holter Monitoring, n.d.). However, this device must be worn by the patient continuously to ensure an accurate monitoring of the cardiac muscle (Holter Monitor, 2015). This patient did not wear his Holter monitor consistently enough for the doctor to make a diagnosis and the patient was ordered to wear the monitor for an additional recording session.

During the next recording session, the Holter monitor revealed a significant event in the patient’s heart called ventricular tachycardia, or V-Tac, that causes palpitations of the cardiac muscle, a slowed heart rate, and weakness (Koplan, 2009). The patient’s doctor’s office called him and insisted he come into the hospital immediately. During the hospital’s evaluation of his condition, he was placed on a calcium and magnesium drip as his calcium levels were decreased as a side effect of his hypoparathyroidism illness. The patient experienced a second V-Tac episode and underwent open heart surgery to address the V-Tac episodes and an additional atrial flutter that had been identified through a cardiac catheter ablation. Catheter ablations attempt to correct heart arrhythmias through the destruction of the heart tissue that seems to be causing the arrhythmia (Ablation for Arrhythmias, 2016).

During the heart surgery of the patient, the cardiologist was able to recreate the atrial flutter and thus fix it with the catheter ablation. However, the cardiologist was unable to recreate the V-Tac episodes. The cardiologist and the anesthesiologist assigned to the surgery woke the patient up and asked if they could drop the patient’s calcium level, which had been brought to the proper levels in preparation of the surgery, because they believed the extremely low levels of calcium the patient experiences had influenced and possibly caused the V-Tac episodes. The patient dissented and the V-TAC issue was not replicated in surgery, therefore the possibility of the patient experiencing another V-Tac episode in the future is possible.

The patient was required to take a beta blocker to restrict his heartrate from exceeding a certain number of beats per minute. A beta blocker slows a patient’s heartrate down by blocking the norepinephrine and epinephrine (adrenaline) from binding to beta receptors on nerves. This blockage of the beta receptors causes blood vessels to constrict, airways to tighten, and the patient’s heartrate and breathing to slow down, regardless of how much oxygen or blood the body needs to function correctly (Beta Blockers: Drug List, OTC, Brands, and Side Effects, n.d.). The patient stated that the beta blocker was painful, disconcerting, and made him feel very light-headed. As an individual who likes to stay active, the patient was used to getting his heartrate elevated during exercise. The beta blocker restricted his activity level and made his usually active lifestyle very sedentary.

Linq Monitoring Device Implant

While the Holter monitoring device was beneficial for identifying the atrial flutter and V-Tac episodes, the device is bulky and required the use of several electrodes that remain attached to the body. It is cumbersome but acceptable for a few days of observation. In long term monitoring scenarios, cardiologists advise the use of an internal monitor. Medtronic Diagnostics is a third party company that develops the Linq Heart Monitor, a device approximately smaller than the size of a single AAA battery, which is placed between the skin and ribcage on the left side of the patient’s body (See Appendix G) (Reveal LINQ | Insertable Cardiac Monitoring | Medtronic, 2016). The patient had this device placed within his body in 2015 after his second heart surgery via catheter ablation to address the atrial flutter. The lifespan of the Linq device is three years, but the one originally placed within the patient’s body began to show signs of failure within six months of its implantation. The patient underwent another surgery to have the faulty device replaced with a second Linq device in December of 2015. There have been no issues with the patient’s currently installed Linq device.

Reducing Medicinal Dependency

After researching the long term effects of taking calcium supplements, the patient determined he would cut down on the amount of calcium he was taking. Through trial and error, the patient reduced his dependency on Calcitriol, calcium, and magnesium. The patient’s cardiologist determined that the second heart surgery had gone as planned and he was slowly weaned off of the beta blockers. While the patient feels well enough to attend work and conduct strenuous exercise on most days, his calcium levels are still too low to be considered healthy and acceptable and his body is not producing PTH. The patient’s endocrinologist disagreed with the patient cutting down on his calcium but eventually agreed that if he feels well enough, then that is what matters most.

Current Condition

The patient is currently taking 250 milligrams of over-the-counter calcium supplementation twice a day, at 10 in the morning and 8 at night.  The patient is inconsistent with when he takes the calcium and refuses to take his prescription of Calcitriol, which means his body may be receiving the calcium he is giving it twice a day, but the calcium is not getting properly absorbed because the body needs proper amounts of vitamin D. The patient claims to not take his Calcitriol because the timing is inconsistent, his work is distracting, and he forgets. The patient will often wake up “groggy”, or mentally impaired, and occasionally throwing up bile. However, the patient’s consistently decreased calcium levels will affect the patient’s already weakened heart. The patient should focus on increasing his calcium levels within a normal level to preserve his heart in the long-term, regardless of how he feels on a day-to-day basis.

Results and discussion

Electronic Health Record Errors, Faults, and Inconsistencies

The patient rarely accesses his electronic health record via Scripps Health Hospital System’s patient portal, MyScripps, because of the lack of complete and helpful information. When the patient had his original CT imaging completed on his neck to diagnosis the salivary stone in 2008, he went to an imaging clinic outside of the Scripps Health Hospital System. The imagining clinic retains electronic medical records for each patient but they require access to an electronic health record system that is separate from Scripps’ (See Appendix H). For the patient to have the scans from the imagining clinic made available within his MyScripps EHR, he is required to call the imaging clinic and submit multiple types of paperwork to have his 2008 images moved to the Scripps EHR system. This lack of interoperability between EHR systems brings irritation to the patients and a lack of a complete history of a patient’s health if he or she is treated outside of his or her normal EHR supported healthcare system.

In one instance, the patient was required to have the medical records from one of the Scripps Healthcare facilities be transferred to his specialist. He had the option to get the medical records mailed through the United States Postal Service or hand-carry the records himself. The mailing of the records would take seven to ten business days, and the patient had forgotten to request the records be mailed, so he was required to pick up the records at one location and take them with him to his appointment. Relying on a patient to take their own records from doctor to doctor, or having to rely on the patient to submitted a request to have their medical records mailed allows medical records to remain incomplete because patients with chronic conditions  are already overwhelmed with the number of appointments and medications to retain and are likely to forget medical records.

The solution to this particular issue is to ensure hospitals and healthcare facilities implement or update to EHR systems that have interoperability with other EHR systems. When a patient has to complete extra paperwork to get his/her electronic health records merged into one system, it is a time consuming waste when a simple electronic request from one facility to another to have a patient’s records transferred should be sufficient. The consolidation of patient EHRs from each system will help all patients, especially those with chronic conditions which require seeing multiple doctors in multiple systems around the country or world. The meaningful use of EHR systems in the interoperability capacity will support patients with chronic conditions who have a lot to track regarding their medical health.

Biometric Identification Use

Scripps Health Center uses biometric information to identify patients at some of their facilities (Drake, 2013). Instead of fingerprinting, which is impossible with 2% of the population because of damaged fingertip ridges, Scripps Health Center has implemented palm scanning technology called PatientSecure (Wilson, 2003). This type of patient identification scans the patient’s palm and immediately brings up his/her electronic health record, which provides instant and easy identification for every patient if he/she is checked into at a facility which uses the palm scanning devices (See Appendix I). However, the patient stated the palm scanning devices are not always in use, possibly because of system maintenance, and also because the scanning devices are not installed at every Scripps location. During the emergency room visit discussed in the introduction, the palm scanning identification devices were installed but not in use and the patient had extreme difficulty in identifying himself. The muscle tetany, caused by the lack of calcium in the patient’s body, caused a seizing of his muscles and his inability to speak or retrieve his wallet with his identification from his back pocket.

If the palm scanning biometric systems would be in use at all locations at all times, patients would not have to provide a source of identification independent of their own body. If patients are incapacitated, unable to speak or move, the palm scanning biometric system can be used to easily bring up a patient’s electronic health record in the hospital’s system that states allergies, ongoing and chronic health problems, and reduce the number of medical mistakes that are made from a lack of patient identification.

Lack of Emotional Support

Today’s world is linked together through the Internet and many people turn to the Internet when they need medical guidance (Belbey, 2016). When a patient has a rare disease such as hypoparathyroidism, they become a member of a small community that does not have much public awareness. The lack of public knowledge or support can lead to a patient with a rare disease to feel alone in his/her healthcare experience. With the advent of the Internet, social media platforms such as Facebook, Twitter, and personal blogs began to give patients an area to discuss personal healthcare stories, upcoming clinical trials, and connect with professional healthcare providers. It is the responsibility of the patient to seek out these platforms and discuss their health with virtual strangers. This patient, as a middle-aged male, is not classified as an individual who immediately seeks health advice from the Internet. He feels disconnected from other individuals with these chronic conditions, even though he has tried finding people like him on the Internet.

When hospitals have a social media platform that engages patients and doctors, they are cultivating interaction between patients who have similar diseases. This type of support and medical transparency fosters medical knowledge and hope among people with serious chronic conditions. Scripps Health has a Facebook account that it is very active, but it does not encourage patients to discuss medical experiences with each other. Again, patients must seek out support groups individually. The patient portal which he/she uses to view his/her EHR is an ideal place for the healthcare system to place links and information regarding support groups. Through the use of data mining, EHR systems can link approved social media outlets for patient support dependent upon the diagnoses in the patient’s EHR. Hospitals could endorse the social media platforms and patients would not have to search for support groups and reliable information on their own.

Limits of Electronic Health Record Interaction

MyScripps is the portal in which patients within the Scripps Health Hospital System view their electronic health record (See Appendix J). The EHR system gives patients a way to see their laboratory results, email their doctor with concerns, see their complete health record, and make appointments. While the portal is an excellent device for patients to be more involved with their healthcare, the current EHR systems used by Scripps, GE Healthcare’s Centricity Enterprise EHR and Allscripts, is lacking in mobile application support and the doctor/patient email system is flawed (Miliard, 2016). Currently, a patient can look at his/her electronic health record on any mobile device. However, when a patient pulls up his/her laboratory results, the bloodwork is displayed in a desktop setting, which makes reading the bloodwork impossible on a mobile device as the patient must scroll back and forth between small print and unmatched lines of blood chemistry levels. This lack of mobile support is inconvenient for patients who must log into a laptop or desktop machine to properly display the blood test results.

The patient portal that allows patients to view their electronic health record also allows patients to email questions or concerns to their primary care physician and any specialist doctors whose care they might be under for specific illnesses. However, the patient in this research paper has had issues with the allowed length of digital communication with the doctors. He is limited by the system on the number of characters he is allowed to type in his concerns. While his endocrinologist, the doctor with whom he is most in touch with regarding his calcium levels, is prompt with her responses, there is a significant lack of complete communication through this email service. While a patient’s concerns might be lengthy, a well-written email can articulate certain aspects of his/her care that the patient might otherwise forget in a face-to-face doctor’s visit. As appointments with doctors are limited to time slots of 15-30 minutes, allowing a better way for doctors and patients to communicate without character length restrictions through the patient portal would foster more interaction and knowledge of his/her illness by the patient.

The patient prefers to call the hospital system to make appointments instead of using the patient portal. In the early days of his thyroid surgeries and heart issues, the number of appointments the patient had to schedule was numerous. When the patient would call Scripps to make an appointment, appointment reminders were not sent to him by email, text message, or mail. He would have to manually enter appointments into the Microsoft Outlook account managed by his work to keep track of the cardiologist, endocrinologist, and otolaryngologist appointments, as well as all blood test appointments to track his calcium and PTH levels.

Calling the hospital healthcare system to make appointments is time consuming and allows a lack of responsibility when an appointment is scheduled incorrectly. On one occasion, the patient believed he was to attend an appointment in one location because the receptionist phone who scheduled the appointment on the phone told him his appointment would take place in that location. On the day of the appointment, he arrived at the location to learn that the doctor he was meant to see was not scheduled to treat patients at that location on that day. The miscommunication of appointment locations cost the patient a day at work and an additional appointment had to be scheduled. Although the patient could have avoided this scenario by scheduling his own appointment through the patient portal, Scripps Health Center could alleviate situations such as these by sending email appointment reminders or text alerts which notify the patient the day prior and the day of the appointment of the appointment time and location. The patient expressed a great interest in textual alerts getting sent to his phone.

Lack of Monitoring Information Access

Although the patient has access to his EHR through the MyScripps patient portal, the information from his Linq heart monitoring device is not linked to Scripps’ system. If the doctor wishes to discuss something unusual that has occurred with the patient’s heart as identified by the Linq device, the doctor must access Medtronic Diagnostics’ electronic database to pull up the EKG results, and then print the findings out on regular paper to be available for the patient to view during his appointment. The patient has access to his Linq monitoring information, but it is a costly and timely process involving the doctor’s time, the hospital’s paper resources, and the medical assistant who answers the phone to take the request for the information to be pulled for his appointment. The patient is not given access to Medtronic Diagnostics’ portal for their information and their information is not linked to their EHR.

Not having convenient and constant access to his personal health information without the assistance of the doctor’s office is cumbersome and limits a patient’s ability to notice possible correlating events in his healthcare. If the patient was to exercise intensely and it affected his heart’s function, he would not know until his next doctor’s appointment. Urgent heart issues are brought up to the doctor’s office immediately upon occurrence, but less concerning although still important heart activity is earmarked by the monitoring system for later discussion with the doctor. If the patient had access to his heart’s activities through his EHR, he would be more knowledgeable on his heart’s health and stressors from a day-to-day view. Allowing the patient to see immediate results of his heart activity shifts the healthcare experience to be more patient-centered and gives the patient more responsibility for understanding his heart and adjusting his daily activities accordingly.

Patient Monitoring Services

With the many factors that can affect calcium levels in the body, such as exercise, caffeine and food intact, and the levels of magnesium and phosphorus, an individual with hypoparathyroidism finds that keeping their calcium level without excessive calcium supplement use is difficult. The use of a patient monitoring device that allows patients with hypoparathyroidism to check their calcium levels at intervals during the day could give doctors and patients a better idea of what specifically affects his/her calcium levels. The calcium level in a person’s blood is sometimes compared to that of an individual with diabetes’ glucose level in hypoparathyroid support groups. Without glucose, or calcium, in the proper amounts in the body, certain activities such as holding a full time job or completing everyday tasks can be severely affected. Individuals with hypoparathyroidism often find consistent work or exercise causes sudden debilitating cramping and fatigue.

There is an extreme interest by the hypoparathyroid community to have an at-home calcium monitoring system to help monitor which activities will affect an individual’s calcium levels (See Appendix K). This type of patient-centered care can give more control to a person with hypoparathyroidism and allow him/her to safely push their bodies. Currently, a person with hypoparathyroidism has to wait days and sometimes weeks for a doctor to order a blood test within a laboratory to know if their calcium levels are within healthy standards. He/she must continue to take the same amount of calcium, even if it is too much, to prevent themselves from becoming too weak or putting their lives in danger. With a patient monitoring system that allows a patient to check their calcium levels at home, he/she could feel at ease with knowing their calcium is just right or catch it dropping too low before feeling the effects of muscular seizures and having to rush to the hospital.

 

Contributions of your work & lessons learned

Pursuit of a Patient Monitoring System for Calcium Levels

During the research conducted in this paper, it was determined that the need and desire for an at-home calcium monitoring kit among patients with hypoparathyroidism is high. There are multiple social media groups and forums for people with hypoparathyroidism who are determined to properly manage their calcium levels and improve their quality of life. While most people with hypoparathyroidism struggle to work full-time or have a semblance of a normal life because of the fatigue and discomfort hypoparathyroidism brings, there is a specific group of patients with hypoparathyroidism who run Ironman races, marathons, practice Brazilian jujitsu, and lead an active lifestyle. The Facebook social media group, Athletes Beating Hypopara, is a group with 218 members who are either patients with hypoparathyroidism who attempt to complete physically demanding feats or are friends and family members of those with hypoparathyroidism who wish to help their loved ones have a normal life (See Appendix L). This group discusses ways to mitigate tetany, tingling and numbness, and extreme fatigue during and after exercise. While they do not diagnose or justify changing medication without discussing it with a doctor, they do provide their personal experiences, exchange ideas, offer support, and pass along information regarding on-going studies or advancements in the field of hypoparathyroid research.

After discovering this group and a larger group of people who struggle with daily tasks and life, Hypopara Lodge, the discussion of a development for an at-home calcium level testing kit was brought up by the group. Members are willing to band together and create a plan to have a prototype of the calcium level monitoring kit developed with the help of endocrinologists, pathologists, and members of the National Association of Rare Diseases (NORD). While hypoparathyroidism is considered a rare disease, the invention of an at-home test that determines the exact calcium level that is in the blood at the time of the blood drawn could help other patients with other calcium related diseases.

I have reached out to Dr. Michael Levine, chief of the Division of Endocrinology and medical director of the Center for Bone Health at the Children’s Hospital of Philadelphia, in hopes that he might be willing to work with pathology residents at the University of Michigan’s clinical research program to pursue a valid calcium blood test for direct-to-consumer testing. I am pursuing the development of a patient monitoring device that will be integrated into the patient’s EHR when results are updated. The development of the device will take the collaboration of clinical pathologists, endocrinologists, individuals with hypoparathyroidism and others whose lives will be changed by the development of an at-home calcium test kit.

Past Successes and Failures with Clinical Blood Tests

Research on innovative technology for testing calcium levels in the blood was conducted by the privately-owned research company called Theranos in 2014. Theranos claimed their technology was capable of testing levels of calcium in the blood with one drop (Primack, 2015). The current test for calcium in the blood by an independent laboratory requires at least two full tubes of blood to be properly read (PTH, Intact (ICMA) and Ionized Calcium, n.d.). However, Theranos is under scrutiny by the Food and Drug Administration (FDA) for the technology used by their tests and has cast doubt on the validity of the blood tests results (Primack, 2015). Walgreens Pharmacy had originally provided these blood tests produced by Theranos until the FDA suspended licensing for the tests and the tests were removed from Walgreens Pharmacies (Primack, 2015). While the instability of the tests produced by Theranos speak to the difficulty of preventing molecular breakdown of small amounts of blood during the calcium tests, Theranos stands by their technology and might have made a significant breakthrough in blood tests (Primack, 2015).  

The innovation of using one drop of blood to test calcium levels of a patient would completely change how disease management is conducted by the group of individuals who are diagnosed with hypoparathyroidism. Talks have already begun in these social media groups regarding the validity of past tests created by Theranos. If a test was created that allowed small amounts of blood to be used for calcium and PTH testing, a device could be created similar to a diabetic’s glucose test monitor to allow patients to monitor and regulate their blood calcium levels. A prototype that updates a patient’s EHR would provide complete and accurate blood serum levels for a patient over time. Coupled with a patient’s knowledge of activity levels, diet, and medicinal habits, doctors and patients can work together to treat diseases like hypoparathyroidism more effectively and possibly reduce adverse side-effects of long term care.

Prototype

The proposed prototype will be ideally bought by the hospital or covered by insurance and given to the patient for daily monitoring of the level of calcium in his/her blood. The patient will be required to obtain lancets (See Appendix M) and test strips, preferably also covered by insurance. The patient will take the device home with them, plug it into the wall jack for power, and test their blood as necessary.

The at-home calcium test kit will be similar to a blood glucose meter. Patients who need to test the level of calcium in their blood should prick their finger with a clean lancet and deposit the blood drawn onto a test strip. Once the strip is saturated with enough blood, the strip can be inserted into the calcium level test reader. After a few seconds, the display screen will indicate the exact level of calcium in the blood at the time of the blood draw. The patient can see if they need to take more calcium immediately to offset their fatigue or tetany. Inversely, a patient who takes over 3000 milligrams of calcium a day can begin to safely decrease their dependency on the calcium by testing the levels of calcium in their blood as they decrease the amount they take without affecting their calcium levels.

With this prototype, the levels recorded by the patient monitoring system will be linked via wireless Internet to the patient’s home network and will contact the hospital’s EHR system through a virtual private network (VPN). The VPN will provide safe connectivity to the hospital’s EHR system and fully encrypt the patient’s healthcare data as it is transferred. The user should not be required or allowed to access the graphical user interface that sets up the VPN with the hospital. The VPN should be set up and managed by the hospital’s information technology staff. The patient’s identification number will be input into the patient monitoring system by the healthcare information technology staff. Through the VPN, the monitoring system will send every blood test that it encounters to the EHR system housed by the hospital. The patient’s identification number will be looked up by the EHR system as it receives notice of an incoming test result, the patient’s electronic file will be updated, and the blood test results should be immediately made available to the patient and doctor through the EHR.

While this prototype is currently meant to stay at the patient’s home and remain connected to the home’s network, it is within reason to expect development of a testing system that is smaller and portable to be connected to a “home base” for updating the patient’s medical information in his/her EHR. Further developments may include a way for blood tests to be conducted through a patient’s personal cell phone and have the results updated within the patient’s EHR immediately.

The results of the blood tests getting uploaded to a patient’s EHR will allow doctors and patients the ability to view chronic conditions in a more complete manner. In the particular instance of this patient, calcium levels and heart arrhythmias can be tracked and linked to certain levels of activities and medication intake. This will provide a more complete picture of the patient’s health as related to everyday activities and care. If the patient’s Lync heart monitor would also be updated within his EHR, a CDSS could begin to drawn relations between heart activity and the patient’s blood calcium levels. Currently, the cardiologist and endocrinologist believe there is a correlation but do not have any evidence to support their hypotheses. The data collected by the Lync heart monitored and the proposed calcium patient monitoring kit would provide long term evidence to support or disprove the doctors’ theories. With clearly obtained evidence of a correlation between calcium levels and the heart condition of this patient, as well as others with these chronic conditions, doctors would be more likely to find a solution to address both issues. Thus, the EHR system could prove as a valuable tool for chronic disease management, research, and development of new technology and drugs in the healthcare field.

Lessons Learned

Patients with chronic diseases are often overwhelmed with information, doctor’s appointments, and medicine he/she is required to take. Healthcare Information Technology systems like Scripps’ EHR system can greatly improve the quality of healthcare a patient receives if the systems are fully integrated, interoperable with other EHR systems, accessible in all hospital locations, and used to help patients attain the best possible healthcare. MyScripps Hospital is currently upgrading their EHR system from the outdated GE Healthcare’s Centricity Enterprise EHR and Allscripts system and implementing the EPIC EHR system throughout all of their hospitals and ambulatory centers (Miliard, 2016).

The Epic EHR system claims to address interoperability issues with EHR systems outside of the Scripps Hospital System (Miliard, 2016). With the interoperability of this EHR system, patients at Scripps will no longer have to worry about having their medical records mailed from one hospital system to another. Patient healthcare information will be immediately transferred in an electronically secure manner and all patient records will be complete. Implementation of this new EHR system should begin in 2017 and bring continuity between every system within Scripps Health as well as begin to eradicate the missing parts of patients’ electronic healthcare records.

Conclusions

Healthcare Information Technology is greatly improving the lives of patients with chronic diseases. However, there are lapses in the technology such as incomplete EHR records, a lack of interoperability between EHR systems, and patient monitoring device information that is collected and not fully put to use by the healthcare field. Addressing these discrepancies can further improve chronic disease management, drive patient-centered healthcare, and bring a new understanding of complete patient health by addressing a patient’s entire bodily health instead of focusing on individual chronic issues. Using EHR systems to their fullest extent can prompt patients to understand their chronic diseases in a more complete light with social media support, knowledge, and experience sharing.

Full and proper use of the EHR systems can drive research and development of the medical field. Correlations between chronic diseases can be noticed and addressed through integration of patient monitoring systems. This data collected by patient monitoring systems can enable doctors to view the patient’s health as a whole, and allows clinical decision support systems to draw possible conclusions regarding the long term health and disease management of patients with chronic illnesses. To ignore the possibilities that can be developed through a well-maintained EHR system is to not fully support the health of the patients.

Ultimately, healthcare information technology is unlimited in how it can support the healthcare community, from patients to doctors and everyone in between. Medical advancements can be more possible through the evidence-based information gathered by EHR and CDSS systems. Identifying the weaknesses in the implantation of EHR systems can bring better designs to EHR systems and more meaningful use to the healthcare field.

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Appendices

Appendix A:

This image shows an example of the health information gathered by an externally worn FitBit.

fitbit

Appendix B

This image shows the externally worn Holter monitor with an example of the EKG reading.

ECG

Appendix C

The following questions were sent to the patient through e-mail on June 9th, 2016:

-Specific type of cancer?

-Were you referred to Scripps by your general practitioner or was he already within the Scripps system?

-How did they know something was wrong?

-Rough dates of diagnoses:

-Rough dates of surgeries and what they were for:

-What type of specialists have you seen? (I know you have an endocrinologist and a cardiologist)-

-Did you go to the same hospital or hospital system for all surgeries and ER visits? (Because Scripps uses the same Electronic Health Record system for their hospital and 26 outpatient centers, anyone included in that system would be “yes”)

-What special tests did you have to get done? (MRI, CT scan, etc.)

– (This one is almost comical) How did you track your appointments? Do you have a family member or friend assist you? Have you ever mixed up what doctor you were supposed to see?

-Can you access your records? Your blood test results? X-rays or results of other tests or scans?

-If you can, do you like the interface? Are you able to email your doctors within the system?

-How often do you need bloodwork?

-How do you track what medicine you take?

-Are your prescriptions from different doctors? (I’m trying to determine if the system will warn all doctors of possible drug interactions with medicine you were prescribed by other doctors)
– Do you always remember the questions you think to ask your provider? Do you ever write them down?

-Did you ever have to hand carry records between doctors?

-Did you ever have to repeat paperwork (like constantly fill out allergies or medications you’re currently taking) or verbally answer the same questions over and over again (verbal confirmation of information already taken down is not the same thing. I have had issues where they will continue to fill out the same records for me over and over when I go to the doctor)?

-Did you experience any particular areas of irritation regarding your medical information (accessibility, continuity between doctors, etc.)?

-How was insurance taken care of? (I need help understanding this one because I have never used private insurance so I have no idea what the process is) Do you receive bills? Do you have to contact your insurance every time you visit for pre-approval? Did you have to modify your insurance?  Did your premium go up?

-When you had to go to the ER and you were incapacitated, how did they identify you? You mentioned you had a card to give them. Do they recognize you on sight when you go? (I know medical laws require you to identify yourself, so if you can’t, does that card suffice?)

-Have you ever experienced any issues with medical privacy? (Thinking HIPAA impact here) Did you ever feel like your medical privacy was compromised? Since I have no idea what your wife does at the hospital, I’m guessing at this one but has there ever been a crossover in medical and personal life? Like, was she allowed to treat you or see you medically?

-Is there any way you would improve your medical record experience?

Appendix D

This image shows the fine needle aspiration (FNA) conducted to biopsy the lump in the patient’s neck.

FNA

Appendix E

This image shows the location of the parathyroid glands in relation to the thyroid gland in the patient’s neck.

thyriod

Appendix F

This image shows the acceptable levels of calcium in a person’s blood by age (8.5-10.2 mg/dL).  Normal PTH Levels are (10-65 pg/mL or 10-65 ng/L).

PTH

Appendix G

This image shows the internally placed Linq Reveal Heart Monitor that synchronizes with the Blackberry assigned to the patient.

G

Appendix H

This image shows the login screen for the imaging clinic that is not tied to Scripps’ Electronic Health Record system.

H

Appendix I

This image shows the PatientSecure palm scanning biometric technology currently used by Scripps Health.

I

Appendix J

This image shows the initial login screen for the MyScripps portal for patient access to their personal health records.

J

Appendix K

These images are from the Hypopara Lodge Facebook group regarding their desire to see an at-home calcium level test kit.

K

 

Appendix L

This image shows the hypoparathyroidism Facebook Group for those who wish to maintain an active lifestyle while living with the disease.

L

Appendix M

This image is of blood lancets, which are used to pierce the skin and produce a drop of blood for testing.

M

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