By Jacob H. Marquez

Patient-Powered Networks are organizations – such as patient registries, chronic disease management programs, wellness programs, and other health organizations – that have placed extra emphasis on the patient experience. They realize that by providing the means for these patients to submit health information and share ideas and feedback, research and programs will inevitably improve.

Successful patient-powered networks know how to provide value to patients through educational resources, an online social community, or other content that facilitates a reciprocal relationship. These 8 patient-powered networks continue to raise the bar, setting the golden standard for future organizations.

CCFA Partners

CCFA Partners is a study of 13,000 patients with Crohn’s disease or ulcerative colitis. It is a collaboration between Crohn’s & Colitis Foundation of America (CCFA) and the University of North Carolina School of Medicine.

Patients who sign up to participate are provided the opportunity to submit suggestions and vote on research priorities. They are also able to create a social profile and connect with other patients near them or around the United States. The most exciting benefit is the personal Health Tracker and dashboard available within the patient portal, allowing patients to connect health devices and track their health.

COPD Foundation

The COPD Foundation is on a mission to improve the lives of individuals affected with Chronic Obstructive Pulmonary Disease (COPD). Their COPD Patient-Powered Research Network, striving to become the largest network of patients affected with COPD, gives members the opportunity to be important contributors to the direction of research.

The COPD Patient-Powered Research Network raises the bar when it comes to being “patient-powered”, as well as patient-centric. They have several big initiatives geared towards educating and supporting patients with COPD and others involved in the movement. They include COPD Crowdshaped, PRAXIS, Reel COPD, and COPD360social – an online community where patients, researchers, and providers can connect with one another. The COPD PPRN also took advantage of Apple ResearchKit, allowing more individuals to be reached and giving them access to their patient portal on any web-enabled device.

DuchenneConnect

DuchenneConnect is the leading online registry for patients with Duchenne and Becker’s Muscular Dystrophy (DBMD) and their family members. A part of the larger organization Parent Project Muscular Dystrophy, its mission is to help members learn more about DBMD, how to manage their symptoms, and be involved in developing new treatments.

DuchenneConnect provides extra value to members in several ways including being able to compare disease state against other registry members, joining educational webinars, and asking experts specific questions. They also provide free genetic testing and counseling to people with DBMD who have limited access to testing due to financial limitations.

Health eHeart Alliance

Health eHeart Alliance is a patient-powered research network supported by the Health eHeart Study through University of San Francisco. Their mission is to empower patients to become a central stakeholder in research surrounding heart health. They encourage participants to discuss research ideas, co-develop protocols, and hear back from the actual researchers about recent findings.

Participants of the Health eHeart Alliance also receive monthly newsletters containing participant stories, new research opportunities, recent cardiovascular disease research, and other interesting information. If they decide to participate in the actual Health eHeart study, participants are given personalized tools to predict their risk of developing cardiovascular disease.

iConquerMS

iConquerMS has conquered the “patient-powered” aspect of a patient-powered network. They put people living with multiple sclerosis (MS) in the driver seat, allowing them to contribute health information and submit ideas for research topics. They understand that the individuals living with MS know the disease best and can provide the best sense of direction in regards to future research.

iConquerMS realizes the power of small and big data. By collating data from disparate sources containing a patient’s health data, they can form a 360 degree view of a patient. From this, researchers can derive insights into which treatments work best among different subsets of the population.

ImproveCareNow

Connecting 77 care centers, 710 physicians, and over 22,000 youth, ImproveCareNow is the world’s largest pediatric Irritable Bowel Disease registry. Their mission is to “transform the health, care, and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network.” As a result of their hard work, over 90% of registry participants have achieved proper growth and nutrition to live active, healthy, happy lives.

LOOP is their blog, where a variety of contributors share personal opinions, research, and helpful information. Along with these posts, ImproveCareNow tells amazing stories of registry members in a way that others can relate. The latest #myICN story focused on Wesley.

Interactive Autism Network

The Interactive Autism Network (IAN) was established, in partnership with Kennedy Krieger Institute and Simons Foundation, to facilitate research leading to advancements in understanding and treating autism spectrum disorder (ASD). It is composed of the IAN Community – an online educational resource center – and IAN Research – a scientific study involving individuals with ASD, their families, and researchers.

The IAN does an amazing job creating content for their community. Their site is filled with educational information on ASD including an introduction to what it is, therapies, and research. Their most impressive pieces of content resides in their blog, where they have identified topics relevant to both individuals with ASD and their families. A perfect example is their post “Romantic Relationships for Young Adults with Asperger’s Syndrome and High-Functioning Austism”.

NephCure Kidney International

As the only organization committed to supporting research for Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, NephCure Kidney International has a responsibility to be the primary source of information for these conditions. As shown by their website and the NephCure Kidney Network Patient Registry, they have embraced this challenge.

Nephcure understands the patients involved in their patient-powered network are the compelling stories people want to read. They’ve done a great job creating a database of such stories spanning a variety of experiences.

NephSpace is their online support community, open to patients, caregivers, family members, and friends. This online patient community creates a space for individuals to connect with one another and learn from each other’s experiences.

Combining the reach of these 8 patient-powered networks, 140,000 patients are steering research to improve the outcomes for patients everywhere. Giving back to these individuals for their time and efforts is important to ensure their continued participation, as well as recruit more patients.