Using patient experiences on Dutch social media to supervise health care services: exploratory study

Social media has become mainstream and a growing number of people use it to share health care-related experiences, for example on health care rating sites. These users' experiences and ratings on social media seem to be associated with quality of care. Therefore, information shared by citizens on social media could be of additional value for supervising the quality and safety of health care services by regulatory bodies, thereby stimulating participation by consumers.

The objective of the study was to identify the added value of social media for two types of supervision by the Dutch Healthcare Inspectorate (DHI), which is the regulatory body charged with supervising the quality and safety of health care services in the Netherlands. These were (1) supervision in response to incidents reported by individuals, and (2) risk-based supervision.

We performed an exploratory study in cooperation with the DHI and searched different social media sources such as Twitter, Facebook, and healthcare rating sites to find additional information for these incidents and topics, from five different sectors. Supervision experts determined the added value for each individual result found, making use of pre-developed scales.

Searches in social media resulted in relevant information for six of 40 incidents studied and provided relevant additional information in 72 of 116 cases in risk-based supervision of long-term elderly care.

The results showed that social media could be used to include the patient's perspective in supervision. However, it appeared that the rating site ZorgkaartNederland was the only source that provided information that was of additional value for the DHI, while other sources such as forums and social networks like Twitter and Facebook did not result in additional information. This information could be of importance for health care inspectorates, particularly for its enforcement by risk-based supervision in care of the elderly. Further research is needed to determine the added value for other health care sectors.