Online health network PatientsLikeMe is teaming up with rare disease-focused Shire Pharmaceuticals to develop digital communities and create research opportunities for people with highly specialized, often underserved conditions.
Treatment and study of rare diseases is challenging for many reasons. For one, patient populations are small and spread out around the world, and many may not have access to specialists who understand their condition. It can take years to diagnose any given rare condition, and their geographic distribution and limited numbers impede large-scale clinical trials. Even if enough data is available to develop therapeutics, the financial burden of testing and bringing a so-called orphan drug to market usually outweighs the small economic gains pharmaceutical companies would see.
“Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases. We typically study patients at a specific point in time in a clinical setting that may be far from home,” Philip Vickers, Shire’s head of research and development, said in a statement. “Our collaboration with PatientsLikeMe will enable Shire to understand how disease impacts patients in their own environment and integrate data from multiple sources on a single platform. Our goal is to gather a more complete picture of the patient and caregiver experience that could potentially guide the development of new, more patient-centered treatments.”
Through the multi-year collaboration with Shire, the two companies will focus their efforts on creating more opportunities to connect patients with rare diseases through PatientsLikeMe’s platform, which allows anyone with a chronic condition the opportunity to track and share symptom and treatment experiences and contribute data for research.
The collaboration both harkens back to PatientLikeMe’s founding principle of creating community and research opportunities for people with rare diseases as well as leveraging new and emerging capabilities thanks to larger, richer datasets. Originally founded as a resource for people with amyotrophic lateral sclerosis (ALS) in 1998, PatientsLikeMe has since expanded to include resources for over 2,700 conditions, and claims the platform has over 400,000 members.
As membership to the platform has expanded, so have PatientsLikeMe’s datasets and partnerships. In February 2015, they partnered with Walgreens to offer patient-sourced data on medication side effects. As of late, PatientsLikeMe has expressed interest in getting richer data from its members, such as that from sensors and wearables. In January, PatientsLikeMe partnered with health data and genomics company iCarbonX (who also led the online network’s $100 million funding round), effectively enabling expansion of several genetic sequencing projects PatientsLikeMe is currently involved in.
“Rare diseases is obviously a fascinating area for opportunity, and one that we’ve always been devoted to,” PatientsLikeMe President and cofounder Ben Heywood told MobiHealthNews. “Since we started out, there have been incredible breakthroughs where advocacy, patient networking and research organizations are all coming together to improve treatment and support for people with rare diseases. As digital tools get more mature and sophisticated along with emerging biology, we are going to be able to rapidly pull people together across geographic locations.”
While the support of the social network feature has been popular with patients, the near real-time research platform provides a valuable resource to physicians, regulators, researchers, pharmaceutical companies and nonprofits, as they can use it as an information and study recruitment hub to develop more effective products and treatments.
“Digital technologies are driving a major shift in healthcare, empowering patients and their caregivers to take greater control of their health outcomes, and enabling better insights into patient needs,” Shire Chief Information Officer Karl Hick said in a statement. “The collaboration between Shire and PatientsLikeMe will create an empowered and enlightened community of rare disease patients and caregivers, and integrate cutting-edge technologies to build a full understanding of the disease and diagnostic journey.”
Researchers, physicians and patients are increasingly looking at digital tools to improve resources and support for people with rare diseases. Recently, Boston startup FDNA launched a suite of apps called Face2Gene that uses facial recognition and AI to improve diagnoses of thousands of different rare diseases. Most tools are more specialized: In January, Penn Medicine launched a new ResearchKit app aimed at people with a rare condition called sarcoidosis, and in 2015, Boston Children’s Hospital tapped IBM Watson’s cognitive learning platform to help studies on a rare genetic form of kidney disease.
“I think rare diseases are a real opportunity where the internet and digital tools can make a significant difference,” Heywood said. “Patients and physicians are so isolated, and many doctors may only see one patients with a particular rare disease in their lifetime. Working with Shire to bring everything together, allowing patients, doctors and researchers to have a shared, digitized experience is something we are really excited about.”
