Do-It-Yourself Healthcare

The Internet has made medical information more accessible than ever before.  People with serious illnesses like aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , myelodysplastic syndromes myelodysplastic syndromes: (my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at… (MDS), paroxysmal nocturnal hemoglobinuria paroxysmal nocturnal hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… (PNH), or other chronic diseases sometimes at first know more about their condition than their physicians.  

But reading about and understanding a medical condition is only part of the process.  Patients and physicians are beginning to embrace a new era within healthcare which is informally known as “Do-it-yourself healthcare”. Do-it-yourself healthcare focuses on patients as consumers; it motivates and empowers them to be informed and in-charge of their own care -- safely, affordably and at their own convenience. Technology such as portable medical devices (glucose readers, blood pressure machines, etc.), apps, tablets, and smartphones have made do-it-yourself healthcare much easier and goes beyond the patient’s ability to look up symptoms online. Accordingly, companies have been able to create apps that can simulate a check-up, monitor conditions, and give users of the technology the ability to have access to their health information anywhere and anytime.

These advances are just the beginning and have served as a platform for building even more intuitive mobile medical devices and applications that may be able to monitor vital signs, analyze blood and urine, track medication adherence and more. According to a study done by PricewaterhouseCoopers Health Research Institute, a third of consumers said they would use a home urinalysis device and more than 50% of physicians said they would use data from such a device to prescribe medication or decide whether a patient should be seen. As a result, nearly 90% of physicians said these patient devices and apps will be important to their practices in the next five years.

AA&MDSIF is participating in the do-it-yourself trend. We developed a Treatment Tracker app, designed to help patients and their caregivers track daily wellness and adherence to prescribed treatments. It also encourages better communication between patient and healthcare providers.  The Treatment Tracker (smartphone and iPad app, Excel spreadsheet and paper version) can help patients to monitor their progress, record their reaction to therapies and track their medication and blood work lab values. The information can then be shared with doctors and others as indicated by the patient. 

We would like to hear your thoughts on “do-it-yourself healthcare” or tell us how using the AAMDS Treatment Tracker has helped you adhere to treatment.