Online Communities Empower Patients And Doctors With Data [Future Of Health]

Online Communities Empower Patients And Doctors With Data [Future Of Health]

The huge amount of information being shared on communities of people with the same health concerns is valuable to researchers looking for treatments.

  • 5 march 2014

As people with chronic health conditions find others with similar experiences online, these new communities are vetting and testing condition-specific treatments and sharing the results with one other. They are not only valuable to their members, but to doctors and researchers as well, who can delve into the large amounts of voluntary health data created by these groups.

As part of the Future of Health report from PSFK Labs, we are watching the rise of Social Support Communities that share treatment advice and emotional support. Eventually these communities have the potential to become highly-rated go-to sources for health information, and the trend towards going to social networks before seeing a doctor is one we only see increasing. Several new companies have entered the marketplace to serve this need, focusing first on specific conditions, treatments or activities, to connect patients, empowering them to take charge of their health with doctors as partners rather than the sole source of knowledge.


Crohnology is a social network that helps people with Crohn’s disease to better manage their health while sharing best practices with their fellow patients. Anyone managing Crohn’s, colitis, or other types of inflammatory bowel conditions can join the site to track their day-to-day conditions and recount solutions that have worked for them. While the project has launched with a focus on Crohn’s, the ultimate goal is to build a patient-centered information sharing network for all people with chronic conditions.

Users enter their medical histories into the site and track them via text. Patient data is then compiled and visualized as a easy-to-understand graph. Crohnology can help patients lower medical costs by  letting them tap into the knowledge and experiences of every other user, so that each patient can learn how well treatments have worked for others. Patients can also earn ‘karma points’ for answering surveys and initiating polls on the website that provide valuable feedback for healthcare providers and medical companies.


Smart Patients out of Silicon Valley has created an online community and information database for cancer patients and their caregivers. In this online community people can learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience. The site hopes to empower its users with an informed point of view about their condition and a support network to help them face the challenges of treatment as they try to find a path to being a survivor.

Believing that patients are the most underutilized resource in healthcare, who often become experts in their diseases, Smart Patients conducts surveys of its users and shares patient insights with healthcare and pharmaceutical companies in the hope that the input will lead to improved practices. Founded by a pioneer of early online health communities and the former Chief Health Strategist at Google, the Smart Patients creed is that the next tipping point in medicine includes tapping into the knowledge created by networks of engaged patients.


Online social health support doesn’t have to be exclusive to people with serious conditions; Romanian startup Social Rehub has a mobile app that incentivizes friends to end bad habits by making them accountable for their actions.

Users download the app, input their bad habit, and invite their friends to join them as they collectively keep their respective actions check. Each time a person engages in their bad habit and a fellow user reports them, the app charges money that is placed in a ‘tip jar’. The money can then be used by the offender’s friends for a treat or be given to a charity. The app aims to create communities in workplaces that are open to people mentioning things that bother them, and to foster healthy lifestyles among colleagues and friends.

Trust in the wisdom of the crowd may still be in the early stages when it comes to health care, but with enough time these support networks could rewrite how medicine is performed, putting patients and doctors on more equal ground.

With the help of our partner Boehringer Ingelheim, PSFK Labs has released the latest Future of Health Report, which highlights the four major themes and 13 emerging trends shaping the evolving global landscape of healthcare. To see more insights and thoughts on the Future of Health visit the PSFK page.

Contributed by Nestor Bailly

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