In the early 90s, Britt Johnson‘s life was like that of any healthy young girl. Until suddenly, it wasn’t. In the summer of 1992, Britt came down with strep throat for the first of what would be many times. Over the next several months, Britt encountered one health setback after another. Months of health setbacks turned into years, during which time Britt had repeated contact with the healthcare system. This contact was not always positive. Britt received a series of misdiagnoses and was even accused of being a hypochondriac. Finally, at the age of 20 Britt was diagnosed with Psoriatic Arthritis. Britt’s disease has continued to progress, and her diagnosis has been amended to Spondyloarthropathy and Rheumatoid Arthritis.
Our most rare or unique qualities can often be our greatest strengths, but when it comes to disease, rarity is a tremendous challenge. A rare disease, also known as an orphan disease, is any disease that affects a small percentage of people. In the United States, a disease is considered rare if it affects fewer than 200,000 people at any given time. According to the National Institutes of Health (NIH), there are more than 6,800 rare diseases. Though each of these diseases are rare, having a rare disease of some sort is not. Approximately 30 million Americans, or almost one in every 10 people, suffer from a rare disease.
Living With a Rare Disease
The numbers cited above are interesting, but they don’t tell the whole story. The rest of the story relates to the daily struggles of rare disease patients and their support networks. Rare disease symptoms vary even among patients suffering from the same disease. This symptom variability, combined with lack of scientific understanding and awareness, can lead to delayed diagnosis and difficulty accessing treatment. Patient quality of life is severely affected by the “loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”
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Orlando, Florida, was recently host to the eHealth Initiative Big Data conference. Tabbed “Leading IT Forward,” the conference brought together a variety of stakeholders to discuss issues related to data interoperability, analytics, and sharing of best practices.
What is meant when someone uses the term ‘Big Data’? Wikipedia states that Big Data:
is a collection of data sets so large and complex that it becomes difficult to process using on-hand database management tools or traditional data processing applications. The challenges include capture, curation, storage, search, sharing, analysis, and visualization.
Big Data as it applies to patient health has its own set of challenges. The lack of interoperability between different EHR vendor platforms prevents a complete longitudinal view of the patient necessary to tell the full health story. Just think of the gap in EHR communication that exists between the outpatient and inpatient care delivery systems as one of many examples. More…