Harnessing the cloud of patient experience: using social media to detect poor quality healthcare

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Felix Greaves, Daniel Ramirez-Cano, Christopher Millett, Ara Darzi, Liam Donaldson

Recent years have seen increasing interest in patient-centred care and calls to focus on improving the patient experience. At the same time, a growing number of patients are using the internet to describe their experiences of healthcare. We believe the increasing availability of patients’ accounts of their care on blogs, social networks, Twitter and hospital review sites presents an intriguing opportunity to advance the patient-centred care agenda and provide novel quality of care data. We describe this concept as a ‘cloud of patient experience’. In this commentary, we outline the ways in which the collection and aggregation of patients’ descriptions of their experiences on the internet could be used to detect poor clinical care. Over time, such an approach could also identify excellence and allow it to be built on. We suggest using the techniques of natural language processing and sentiment analysis to transform unstructured descriptions of patient experience on the internet into usable measures of healthcare performance. We consider the various sources of information that could be used, the limitations of the approach and discuss whether these new techniques could detect poor performance before conventional measures of healthcare quality.

Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond

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Baldwin, Mike; Spong, Andrew; Doward, Lynda; Gnanasakthy, Ari

Internet communication is developing. Social networking sites enable patients to publish and receive communications very easily. Many stakeholders, including patients, are using these media to find new ways to make sense of diseases, to find and discuss treatments, and to give support to patients and their caregivers. We argue for a new definition of patient-reported information (PRI), which differs from the usual patient-reported outcomes (PRO). These new emergent data from the social web have important implications for decision making, at both an individual and a population level. We discuss new emergent technologies that will help aggregate this information and discuss how this will be assessed alongside the use of PROs in randomized controlled trials and how these new emergent data will be one facet of changing the relationship between the various stakeholders in achieving better co-created health.

10 Trusts now signed up to use PROMs2.0 starting from March 2012

  1. Salford Royal NHS Foundation Trust - Orthopaedics
  2. University Hospital of South Manchester - Orthopaedics
  3. East Lancashire Hospitals NHS Trust - Orthopaedics
  4. East Cheshire Clinical Commissioning - GroupPulmonary rehabilitation
  5. Stockport NHS Foundation Trust - Orthopaedics
  6. Central Manchester University Hospitals NHS Foundation Trust - Anaesthetic, Urology
  7. Wrightington, Wigan and Leigh NHS Foundation Trust - Orthopaedics
  8. United League Clinical Commissioning Group - ENT
  9. Countess of Chester Hospital - Trauma Network
  10. Royal Liverpool and Broadgeen University Hospitals - Orthopaedics