Patient Voices: The Power of Shared Knowledge

See on Scoop.it – Health Care Social Media Monitor

Driven by an eclectic group of stakeholders the interest in patient-reported health data has grown exponentially in the last decade and shows no sign of waning. Patients themselves are expanding their circle of knowledge beyond healthcare providers and clinicians to include other patients through personal as well as virtual connections.  Healthcare institutions and clinicians in the US, many incentivized by healthcare reform are seeking innovative ways to meet meaningful use criteria for their electronic health records.  Pharmaceutical companies that previously viewed the physician as their primary customer are finding new ways to engage directly with the end user of their products.  Governments around the world are getting involved with initiatives designed specifically around patient generated data. An example in the US is the Patient-Centered Outcomes Research Institute (PCORI).

The volume of patient-generated health data poses a particular challenge across all stakeholder environments.  Traditional methods of health data collection, processing, measurement, validation and analyses are designed not around patients but around the systems within which the data resides.  Clinical taxonomies rarely align with patient folksonomy leaving translation of patient-generated health data vulnerable to inaccurate interpretation.

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