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Meaningful Health Care Informatics Blog

May 29 2011   10:38PM GMT

Clinical data should be publicly available to help patients and clinicians

Posted by: RedaChouffani
EHR, HIE, ITP, public health data

In a recent post, I discussed the value of centralizing data and having the ability to analyze and review outcomes for patients within the VA system. And over the past few weeks, I have spent an incredible number of hours learning about ITP symptoms and treatment options. ITP, or Idiopathic thrombocytopenic purpura, is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. While the internet has been a tremendous resource for education, with physicians providing a plethora of information, there were still many questions unanswered.

After hours of digging, the closest I was able to get to in terms of finding outcome measures based on the different treatment plan was a white paper and study that was done in Turkey on a set of 140+ patients.

The reason I wanted to discuss this subject is simply to identify the potential benefit from having access to a national data bank that will provide the public with statistical information and as well as raw data for educational purposes as reported through EHRs. The data can provide outcome information about recommended treatments for specific conditions, a format which would be similar to what CMS has previously done with various data sets on hospitals. Whether it is a CSV, Excel, mdf or any raw data format without of course any identification information.

While there are sites available that discuss medical conditions from a more personal experience of what patients are experiencing ( is a great example, but still lacked actual medical data), there still lacks scientific and collective data.

During my research on ITP, I found myself asking for very simple data points. I needed to see visual representation that displayed the trend of the platelets counts for patients diagnosed with ITP (ICD9 287.31) and have received one of the three treatments available. The data also needed to have the age of the patient.

In the perfect world, a physician would have access to this information (some physicians do have access to statistical information that is shared within their specialty), but more importantly, this is information that would be useful for the patient or patient’s family who are looking to be involved in the treatment decision making process.

It is imperative to allow the patient to be engaged in the treatment selection when applicable. But to ensure that the patient understands what is being selected, it is key to have access to clinical data that provides concrete evidence on why one treatment is selected and what outcomes other patients have experienced. It is also critical to note that in order to have access to this type of information, it must first be district information. This simply means that EHR must become a means to capture and share clinical information and that is what we have to move towards.

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