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Clinical and Survey "Linked Data" Bring Patient Centricity to a New Level

by Tom Haskell | Oct 27, 2017

The Missing Link!
Clinical and Survey "Linked Data" Bring Patient Centricity to a New Level

Patient centricity is here and it's here to stay. You can even say it's increasing in importance. Pharma companies more than ever are focusing on the patients who actually take their medicines to cure diseases or manage conditions to maintain quality of life.

Stand-alone Real-World Data is just not cutting it for getting a complete view of the patient. There's too many gaps. Claims data is great for understanding the full patient journey, but it doesn't offer the clinical detail or patient vitals necessary for many types of analyses. Electronic Health Records (EHR) data provides test results and patient vitals, but often lacks disease severity measures as well as costs for economic analysis. Finally, patient surveys are well suited for Patient Reported Outcomes (PROs), but don't provide the necessary clinical information for a broad analysis.

The Value of Linked Data

“Linked Data” helps to fill these gaps. By finding the overlapping set of patients from multiple datasets and combining attributes across datasets, you get a broader view of the patient pool. Up until now, most Linked Data has focused on datasets from the physician and payer sides, including linking EHR data with claims data or claims data with laboratory data. While these linkages offer valuable insights not possible from analysis of a single dataset, they still miss an important perspective that is the crux of where we need to be – the patient’s perspective. Critical insights such as the severity of the patient's pain, how a disease is affecting the patient's life, and how much work a patient has missed are all key parts to the full story.  

New Perspectives – Linking Clinical and Survey Data

Surveys that collect disease severity data from the patient's perspective and provide PROs – such as quality of life, workplace productivity and adherence – deliver invaluable insights to researchers. And, if the survey is performed at a large enough scale where linking with claims and/or EHR data is possible, you can now answer questions you only dreamed of before. Questions pertaining to –

  • Market Share –not only quantity of prescriptions, but also QUALITY, e.g. patient’s quality of life improvement.
  • Adherence – by both prescriptions and patients' attitudes towards taking their medicines.
  • Patient Segmentation – segmenting patients by a mixture of their diagnosis/medicine usage and health attitudes and disease severity.
  • Burden of Illness – ability to analyze burden by cost, resource utilization, quality of life, and workplace productivity.

One thing to keep in mind with Linked Data is that you need to make sure you're certified. If any of the data falls within the confines of HIPPA, the linking must be certified to ensure that the patient information brought together from these multiple sources doesn't overly increase the risk of re-identifying the patient. There are statistical experts who can do this risk assessment for you. While it may mean removing or aggregating certain fields to greatly reduce risk, it's entirely worth the effort and required by law!

The bottom line is that you need to start thinking outside of the clinical box. Being able to link clinical data with the patient’s perspective opens up the possibilities of really understanding a disease. And, realizing the true impact of a disease, or how your medicine can cure a disease or help a patient live better with it, will usher in the new age of patient centricity.

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