Sally Okun*, PatientsLikeMe, Cambridge, United States Track: Practice Presentation Topic: Participatory health care Presentation Type: Oral presentation Submission Type: Single Presentation Building: Joseph B. Martin Conference Center at Harvard Medical School Room: Auditorium Date: 2012-09-15 09:00 AM – 09:45 AM Last modified: 2012-09-10

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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.
In 2008 PatientsLikeMe committed resources to harnessing the power of patient-reported health data. Since that time the Health Data Integrity Team has developed a number of conventions for managing patient-reported health data related to conditions, treatments, symptoms, and side effects including its innovative User Voice Dashboard.
To date the HDI team has curated and coded over 7000 patient-reported symptoms and side effects using clinically understood vocabularies including SNOMED-CT (Systematized Nomenclature of Medicine--Clinical Terms) and MedDRA (Medical Dictionary for Regulatory Activities) and as such an emerging Patient Vocabulary is evolving. Patients have completed over 70,000 treatment evaluations of more thatn 5000 treatments. Since April 2011 when PatientsLikeMe opened to any medical condition the team has reviewed, curated and coded over 1200 medical conditions, syndromes and diseases entered by patients and in so doing can now categorize the entries using a variety of filters such as ICD-10 (International Classification of Diseases), SNOMED-CT and rare conditions that too often are not well documented.
In August 2011 the User Voice Dashboard was launched to allow the HDI team greater insight into the intent of the patient at the time they entered a piece of data. The UV Dashboard presents the data to the team in the context of the user experience and allows the team to curate the information more accurately to ensure the data is categorized correctly within the database so that other patients can more easily search and locate information and other patients of most interest to them. To date the team has discovered that almost 10% of the User Voice data represent new data types not previously well described in PatientsLikeMe such as important life events and other milestones experienced along the journey of disease and illness.
This presentation provides a unique view into the background administrative activity that occurs behind the web-based user experience. It also provides a view into the richness of patient-reported data when viewed in the construct of clinically accepted and understood vocabularies. The potential for accelerating the value and validity of patient-generated data is closer to realization when conventional tools are employed in innovative ways. Providing a structured and computable environment for patients to share their knowledge about the challenges, limitations and successes related to their daily experiences of living with illness will have benefits to all stakeholders. As we approach the management of the health journey for ourselves, our loved ones or for the patients with whom we engage having access to the learned experiences of others provides an invaluable asset.