On Rare Disease Day last week, a new online community was launched for patients with Idiopathic Pulmonary Fibrosis (IPF) on the existing patient website, RareConnect. RareConnect is led by the non-governmental, patient driven, rare disease organisation EURORDIS, and makes information available via patient advocacy groups from a variety of countries. RareConnect also provides a forum style platform for patients to meet and interact, allowing users to share individual experiences about how IPF has affected them, creating a sense of community between users. The website even has a translation service for all of its posts, making information available in five different languages and allowing its reach to be truly global.
Rare Disease Day also saw the announcement of Boheringer Ingelheim (BI) working with the online patient community Patient’s Like Me to enhance the website’s IPF community. Patients Like Me is a similar type of platform to RareConnect, but the main differences are that it has not been set up by patient advocates and is not just for rare diseases. With BI’s involvement, it looks like the IPF community now have online spaces on the platform where they can meet others with similar diseases, also allowing patients to input their health info and track their diseases. Although these communities have been around for a few years now, the involvement of patient advocacy groups and pharmaceutical companies to help strengthen these sites is new, developing the pages to be more patient focussed and giving them more of a ‘community feel’.
Tracking patients’ health data in apps and online is a trend we have seen increasingly and now, patient data tracking company, Qualcomm, and patient information site, WebMD, have forged a partnership to track patient data and make information searched for on WebMD, more relevant for the user. Qualcomm partner with a large range of medical devices, such as blood pressure and blood glucose monitors that are connected to the internet and have a cloud based platform, which stores and tracks the health data from these devices. The idea behind partnering with WebMD, is that rather than receiving generic information when searching, you can receive information that is relevant to you. The idea is not new, and we have seen Google collect search information to make searches more relevant, but this is one of the first ways we’ve seen the potential for this style of tailored information for patients in the healthcare setting. The partnership is still early in its development, but it will be very important to see how this develops, and if this style of searching for patient information catches on in the future.
Last week, a study was released in the American Journal of Medical Quality, looking at the correlation between hospital Facebook likes and the quality of the hospital. Not only were the hospitals that had the higher number of Facebook likes more likely to be recommended by patients, it was also positively correlated with the mortality rate, meaning that based on this study, the more likes a hospital had, the better it was. This study shows the importance of having a strong and engaging Facebook presence as well as demonstrating that patients increasingly want more information from hospitals to make a more informed decision about where they seek treatment.