Patients and the digital world: a joint effort is needed

Internet has completely transformed the patient experience. Being a patient in 2018 is completely different from what it was twenty years ago. In the developed world, most people are connected to the internet and use it on a daily basis to search for information -including health information-.

Thanks to the internet we have the possibility of connecting with people from all over the world in real time. Social networks like Twitter, Facebook, Linkedin and Instagram give us the amazing opportunity to meet people with our same interests and needs. All these technologies have great potential in healthcare and are benefitting all the stakeholders across the whole healthcare ecosystem.

The patient connection

Patients have been pioneers in the use of social media for connecting with peers and transforming their experience with the disease. We have all heard about the key role that the internet has played in e-Patients such as Dave deBronkart or Andrew Schorr. Both Dave and Andrew agree that the internet saved their life after a cancer diagnosis thanks to connecting with other patients online and getting to know a new treatment option that helped them to survive. After the work of pioneers like them, nowadays thousands of patients with multiple conditions are creating online communities where to share information and find support.

In the field of rare diseases, in which it is practically impossible to find someone in the “real world” with your same condition, social networks are an incredible tool for patients who look for information and peer-support.

One interesting example is the work done by Dr. Domingo Escudero (@EscuderoDomingo), a neurologist affected by autoimmune encephalitis, a rare disease that was recently discovered and that affects close to 3,000 patients a year worldwide. Escudero and Marc Desanpedro (@DeSanPedro), a social media researcher based in Barcelona, created the hashtag #AntiNMDAR to raise awareness about the disease among neurology specialists. Until recently, the symptoms of this condition could be easily be confused with psychiatric disorders. Domingo and Marc started tweeting about the disease at the beginning of this year and in just a few months they built a community of hundreds of patients and neurologists from all over the world.

Having worked as a journalist and communications consultant for the last ten years I have realised about the key role that social media networks play in the life of a great number of patients that want to improve their quality of life or simply increase the chances to survive a serious diagnosis. The more serious the diagnosis, the more active patients get online. That is the case of cancer, where patients have created powerful communities to support each other and to stay up to date with the latest developments in research. Examples of this include the community of breast cancer patients that gather every Tuesday night to chat on Twitter under the hashtag #BCCWW or the lung cancer community that organises their own support chat every other Thursday at #LCSM.

In my opinion, the power of social media has been fully grasped by the patient community but not by a large number of doctors. I have noticed it in the years of attending healthcare conferences (from cancer to digital health events), where I still see a minority of doctors and nurses using Twitter while patients are much more active and knowledgeable. I see it every day when I use social media networks for my work too.

To boost the power of social media in healthcare we need a collaborative work between doctors and patients. Doctors need to know more about how the patients feel and don’t dismiss the patients’ efforts to be informed and connected with their peers. On the other hand, patients need to be able to contrast the information they gather online with their healthcare professional and to feel they are supported and understood by him/her.  Only with a joint effort we will be able to unleash the power of digital technologies to improve care.

*I will be talking about digital technologies to enhance the patient experience at the WHINN conference (Odense, 9-10 October). Follow updates on the conference at the hashtag #WHINN.