What’s the most important question in medicine?
PatientsLikeMe founder, Ben Heywood, discusses how the Internet has contributed to a rise in patient networks, where patients themselves or parents of children with rare diseases can go online and speak to others in similar situations.
I’m inspired daily by patient stories. They connect with others who have the same disease, often for the first time. They learn about symptoms and treatments by comparing their experiences with those reported by other patients. Most important, some find answers to their most fundamental questions so they can improve their outcomes, and their lives.
This is especially true for patients with rare diseases. And truer still for a mother I’ll call Sylvie. Sylvie’s son was diagnosed with Gaucher’s, a rare disease caused by an excess of harmful fatty substances in the liver, spleen, lungs, bone marrow and, less commonly, the brain. He was experiencing behavioral issues and other problems. She wondered, were they part of the disease, too? Specialists told her that his behavior issues were not connected to his Gaucher’s. And so she asked the most important question of all: what is normal for someone with this disease?
“…this group of parents, joined by their shared experience, is contributing real world data that can be quantified…”
It’s the same question my family asked when my brother Stephen was diagnosed in 1998 at the age of 29 with amyotrophic lateral sclerosis (ALS) / motor neurone disease (MND). As his illness progressed, we tried to slow Stephen’s disease and treat his symptoms. But we couldn’t easily find the right information to understand where he was in his progression, and if what he was experiencing was normal. My brother Jamie and I, along with our friend Jeff Cole, thought there had to be a better way. It’s why we created our patient network.
Stephen’s experience is like that of millions of patients around the world, including Sylvie and her son, who live daily with a disease. They wonder if there is anyone out there like them. Luckily for Sylvie, there was. She found other parents online whose children had Gaucher’s and who reported similar symptoms. Talking with them helped Sylvie to get a diagnosis of autism, and to find the right physicians that could help her deal with both issues. Now this group of parents, joined by their shared experience, is contributing real world data that can be quantified and validated, and will accelerate breakthroughs in care and treatment for Gaucher’s patients everywhere.
More and more, parents of children with rare diseases, who are dealing with new diagnoses of a specific genetic mutation, look for support online and want to share their experiences. They are some of the most engaged and activated people in the healthcare system. And they are a great source for medical understanding, because the patient, or the parent of a sick child, knows the disease’s effect better than anyone.
“Parents of children with rare diseases, who are dealing with new diagnoses of a specific genetic mutation, look for support online and want to share their experiences.”
It’s this basic understanding of disease and the natural history and progression of it that is so vital to empowering patients, to driving smarter action, and ultimately to advancing medicine. But it’s hard to gather the data. It’s even harder to aggregate them so that they can be properly analyzed. Pharmaceutical companies know this because they spend millions of dollars every year trying to characterize diseases.
Sharing online is perhaps one of the most empowering actions patients can do to take charge of their health. No longer isolated, they can talk directly to others just like them, and learn what they did to improve their outcomes and quality of life. In fact, a research study published in Epilepsy &, Behavior showed the first “dose effect curve for friendship.” It demonstrated that people with epilepsy sharing real world experiences online better understand their disease, have more control, and can better manage it. The study’s results explain why peer-to-peer networks are becoming the cornerstone for a new era of patient-centered healthcare. In this world, information flows freely so that everyone can learn from the experiences of others. The result is that patients get support, come to understand their illnesses, and become empowered to manage their condition. All the while, researchers have better access to data, and to patients as partners, to further the fundamental understanding of disease.
“…peer-to-peer networks are becoming the cornerstone for a new era of patient-centered healthcare.”
Connecting patients who have the same rare disease within the broader constellation of all diseases will help us see more about the fundamentals of disease, and reveal new connections that unlock an even deeper understanding of the broader human system.
It all starts with an important question: what is normal, for me? Thankfully, patients are asking.
About the author:
As Co-Founder and President of PatientsLikeMe, Ben Heywood sets the growth and operational strategy for the company so that it can realize its chief goals: to help people living with disease improve their lives and to advance medicine. Since its inception, Ben has overseen all stages of PatientsLikeMe’s growth, including financing, the expansion of patient communities, and business partnerships. He has held a range of positions in the medical device industry and in residential real estate development. Early in his career, Ben served in manufacturing and business development roles at Target Therapeutics, the leading designer and manufacturer of microcatheter-based products for the treatment of stroke, which was later acquired by Boston Scientific. He is a frequent speaker at conferences and an expert source for media on patient issues and patient-centered care. Ben earned his bachelor’s degree in Mechanical Engineering from the Massachusetts Institute of Technology (MIT) and his master’s degree in business administration from UCLA’s Anderson Graduate School of Management.
What do you think is the most important question in medicine?