More data for patients – better health?

Continuous medical education for patients : three basic steps to succeed

While watching the avalanche of articles describing the benefits of “patients’ empowerment” boosted by personal health records, mobile applications, wearable devices, etc., I am thinking about my local GP. Like many other “Hausärzte” (home doctors) in Germany he sits in his small practice with two nurses, both assuming also the role of a receptionist. One probably could find similar practices in many places across Europe. Usually, there are 5-6 people sitting in Dr. Fischer’s waiting room. The queue is forming not because the patients are coming at random. All of them know their appointment time, but often the 12-15 minutes allotted per patient are not enough. Dr. Fischer is a diligent doctor: he nearly always measures blood pressure; if necessary, he takes ECG, performs ultrasound tests, makes injections – and all by himself.

Now imagine that at least half of our 12.000 village inhabitants will get mobile tools like PHR to store their medical data. What will they discover there?

It would be a truism to state that the medical terminology is remarkably weird and mainly serves the purpose to hide facts from a patient. This is reflected in the very beginning of clinical procedures: providing a diagnosis. The latter is denoted as dx or Dx, which is already confusing enough for uninitiated patients. Diagnoses are usually written in specific jargon (for example, “mono“ should be understood as mononucleosis) or using acronyms and initialisms such as, e.g., GCA (giant cell arteritis) which is to denote an inflammation of blood vessels, SLE (systemic lupus erythematosus), an autoimmune connective tissue damage, PE (pulmonary embolism), DVT (deep vein thrombosis) or VTE (venous thromboembolism), etc. It is interesting that medical acronyms related to the same disease are different in different languages (e.g., ТЭЛА stands in Russian for “тромбоэмболия легочной артерии“) which is basically the same as PE. This language-specific difference in acronyms creates additional difficulties. Besides, medical acronyms are notoriously non-unique (in mathematical sense); thus, what can one, for example, understand when meeting “BE“ – bacterial encephalitis, bacterial endocarditis, bacterial endarteritis or something else, depending on the concrete medical context. If a patient sees the term “hypercoagulability” in her/his diagnosis, what will be the reaction? In this case I can imagine my doctor Fischer receiving incessant calls and requests for appointments from patients concerned about their lab results.

A study  conducted by the University of Michigan screening 1,800 adults ages 40-70 discovered that “only slightly more than half of the patients, on average, were able to decipher electronic lab test results on their own”. As a result, contrary to the general belief that online health services (PHR being one of them) will substantially reduce costs by eliminating unnecessary visits, the number of calls and visits to physicians are growing [1]. The observation was proved by the recent Jama study. It was discovered that after using online clinical services there was a significant increase in the per member rates of office visits (0.7 per member per year; 95% CI – confidence interval) and telephone encounters (0.3 per member per year; 95% CI). There was also a significant increase in per 1000 member rates of after-hours clinic visits (18.7 per 1000 members per year; 95% CI) [2]. Information Technologies (IT) seem to be a natural remedy to increase patient’s health knowledge basics. During the recent years one sees good and bad examples of countless mobile and Web applications coming out. Unfortunately, it is still not easy to find relevant apps addressing the needs of consumers in a clear way.

There are at least 3 basic requirements consumers are expecting from developers and professional medical groups:  

Give what we need, not what you can give

The best way to understand what patients need is to follow medical procedures most of us frequently have to go through. For example, a complete blood count test (CBC) is one of the first checks your doctor usually requires you to do. To many people the ranges of their red blood cell proportion or hematocrit (hct) is a puzzle. It is not easy to relate these numbers to the actual risks their deviation from the “norm” can bring to individual. Of course there are some very good online resources like, e.g., National Heart, Lung and Blood Institute [3], that explains the correlations between the measured entities and health symptoms, but a corresponding and convenient consumer application is hard to find. BloodTest2 The top ones that came from the search (blood test, CBC test) were Nokia Blood test, a complete blood count test, and iPhone Blood tracker that records your laboratory values presenting them in a chronological sequence. Unfortunately, even the graphical representation of, say, one’s sodium concentration (needed for blood pressure control) or bilirubin level variations hardly explains how relevant it is for individual health conditions. As for the iTune record Blood Test Pro that contains over 140 laboratory values, it is clearly stated that “only a physician can judge the individual significance of laboratory values for the user’s physical health”. Patients on the other hand are offered numerous applications that explain the differences between various A, B, O blood groups which could be useful for donors, but are of a more academic interest for the majority of people keen to know what it means when, e.g., their homocysteine ratio is above the level of 15 micromole/l.

Present information in a clear way.

According to the NHC guidelines US National Health Council, patients “should receive complete and easily understood information about their condition and treatment options” [4]. This recommendation must be a necessity for consumer medical applications. There are some excellent examples of applications such as, e.g., NHS Choices which I often use to get updated information on medications, verify some symptoms or just to find quick answers to health-related questions that concern me at the moment.MedicalEorrorNHS The information I receive is mostly precise, crisp and clear. Unfortunately, it is not often the case with many other mobile health applications that are abundantly landing on the consumer market. Surfing on MS Store, I recently came across a MedWhat application that offered consumers an opportunity to ask medicine-related questions either by voice or typing it directly into the app. That looked promising, and I immediately typed: “what is the difference between Ramipril and Valsartan”, the two medications that are often prescribed to patients suffering from hypertension. Instead of explaining the difference between Ramipril, a popular ACE inhibitor, and Valsartan, an angiotensin II receptor blocker (ARB), I have received the following: “Ramipril or Valsartan significantly preserved the peritubular capillaries as well as renal function (p. <0.01). Tubulointerstitial hypoxia and tubular TGF-beta expression were noted well before the development of tubulointerstitial damage”. One can only imagine a perplex expression on a face of a lay person who is checking on medications to reduce his/her blood pressure.

Provide health analytics vs. data storage

The majority of applications like Personal Health Records (PHR) are tracking and storing the abundance of medical data (vital signs, laboratory data, medications or doctors’ visits) with no correlations between each other. I can track my blood and sugar levels every day and even each hour, but it is not easy to understand how the new medication I am taking can be compared to the one I had before in terms of effectiveness. The same applies to many samples of consumer medical devices. The typical example of disconnected applications is blood pressure monitors. The majority of them contain only 3 fields: “systolic”, ‘diastolic” and “pulls”. At best, one can put manual comments. You can see what is going on, but with no idea why. For example, if a person having elevated blood pressure switches from Ramipril, an angiotensin-converting enzyme (ACE) inhibitor, to Valsartan? A solution would be a simple backend analysis application, e.g., for a period of three months providing valuable information on blood pressure and medication interaction, preparing a person for a thoughtful discussion with a physician on the impact of the prescribed medication. Unfortunately, such multidimensional analytical consumer enabling applications are hard or impossible to find. So what could be a temporary solution for now? Just put your data in a familiar Excel application and it will make you colorful graphics showing how multiple parameters, e.g., your vital signs, intensity of physical exercises, medications or even weather can correlate with each other and impact your condition.

Call to action

The conclusion one can draw from multiple studies: governments, physicians, developers, etc. can spend a lot of money on creating sophisticated applications and PHRs for patients to access their data, but as long as the majority of people do not understand what those data mean, the effect of such efforts is limited. Educating patients in regard to medical basics is critical for establishing a meaningful dialogue and trustful collaboration between patients and physicians to protect the latter from the burden of unnecessary and time consuming requests from worried patients and for the overall improvement of the quality of care. A continuous medical education for citizens and patients may look like a chain of systematic online medical courses provided by local communities with the support of medical experts (e.g., retired doctors). Such courses will describe, e.g., the functioning of the body organs and the correlations between the main body subsystems: nervous system, circulatory system, respiratory system, digestive system, excretory system, metabolic system in general, etc., together with the pertinent groups of medications, also helping people to read their laboratory tests. Important is that the information is presented in a very clear way, understandable for non-medical community. Health-related consumer applications could be a great help to enrich a consumer’s knowledge in regard to her/his personal health, but these applications should be transformed into a flamboyant multidimensional form emphasizing salient features – a personal analytical health instrument vs. a pack of boring online data copied or transferred from the traditional medical documentation. References:

  1. http://ehrintelligence.com/2014/08/21/study-many-patients-dont-understand-electronic-lab-results/
  2. http://jama.jamanetwork.com/article.aspx?articleid=1392562
  3. http://www.nhlbi.nih.gov/
  4. http://www.nationalhealthcouncil.org/pages/page-content.php?pageid=66
  5. http://www.kevinmd.com/blog/2013/01/computers-meaningless-health-care-computable-data.html

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