“You have cancer.”
Or Lou Gehrig’s disease. Or schizophrenia. Or any other chronic, potentially life-threatening disease.
These are not the words that anyone wants to hear.
There is new hope, though. In an increasingly connected world, patients and their families – even medical researchers – are finding support and fast access to information that can make a real difference to patient health. The new access to data about diseases and treatments through patient support websites has been credited with saving frustration, saving time – even with saving lives.
On websites like PatientsLikeMe, patients can connect to fellow sufferers and read the latest news about progress made against their respective diseases. Other sites, such as Caring Bridge, try to make communication among patients as easy as possible and help people with serious health problems connect to support networks with a speed and ease undreamt of until now.
It’s not a one-way message board, either. Friends and family have a Facebook-like “like” heart button to easily give a digital “thumbs-up” on updates with space to write comments. Without long-distance charges and the time needed to serially contact members of the patient’s circle, being sick has become perhaps just a little more bearable.
Sites like Caring Bridge provide a platform for patients and their closest supporters to broadcast news about their progress to a wider community, and a host of other sites such as Caring Meals, Meal Train and Take Them a Meal provide a seamless online scheduling app that makes providing meals, rides to treatments, childcare, and other support functions easy to schedule without burdening any one member of the patient’s community.
Beyond this vitally important support for emotional well-being and life’s necessities, websites that connect those with chronic health problems with each other and with researchers are making a real difference in the trajectory of individual people, sometimes saving lives. Not only do patients share their stories and exchange encouragement via PatientsLikeMe. They also share data: promising drugs, studies, physicians, and even their own health records.
Benjamin and Jamie Heywood and Jeff Cole started PatientsLikeMe in 2004 in response to their brother and friend Stephen Heywood’s ALS diagnosis at age 29. The site was developed to find more information about Stephen’s disease and find strategies to improve his life. Stephen Heywood died in 2006, but the site he inspired has grown to include sections on more than 2,000 conditions and has more than 250,000 members. The site has grown from three friends gathered around a kitchen table to become a force in the life sciences industry. Calling itself a “for-profit company with a not-just-for-profit attitude,” it partners with universities, non-profits, and pharmaceutical companies to pursue its mission of furthering options for disease suffers. PatientsLikeMe has been named as one of the top 50 Disruptive Companies of 2012 by the MIT Technology Review.
It’s a new paradigm in healthcare: patients are losing that feeling of being not only at the mercy of a ruthless disease process but also of a system that seems at times to see them as guinea pigs for drugs and treatments, or as hostages to the limits of local practitioners. Medical science stands to benefit. With a motivated force of passionate and unpaid foot soldiers providing and annotating data, information about diseases and – something that isn’t always well documented in research – rich data about patient experience – the potential for improved treatments is alluring.
We’re already seeing the benefit of this approach. Information collected about ALS (Amyotrophic lateral sclerosis, or Lou Gehrig’s disease, a disease of the nervous system) through PatientsLikeMe has been shown to have produced useful data on the effectiveness of certain drug therapies more quickly than traditional clinical trials.
But with the recent announcement of a partnership between PatientsLikeMe and Genentech, a subsidiary of pharmaceutical giant the Roche Group , there is reason for patients to closely scrutinize how their data is handled. The deal calls for sweeping access to all de-identified data by Roche for five years – a privilege for which Roche paid an undisclosed amount. PatientsLikeMe is transparent about its existing partnerships with for-profits.
The implications for the future of medical research are worth examining, though. In a world where government and other non-profit scientific research funding is increasingly constrained, should we be concerned about big pharma owning this information and using it for profit?
In the short term, patients and their families, desperate for cures and frustrated by what must seem at times like an uncaring bureaucracy, often see the treasure trove of information about treatments and even success stories as a lifeline. They may gloss over the underlying concerns of a particular company using their collective data to engineer cures; if a promising treatment seems imminent, they may embrace it. But it pays for us to take the long view.
Can we balance caring, profit, and medical progress? With its openness about partnerships and its proclaimed balance between community service, compassion, and profit, PatientsLikeMe may have a formula for a brave new entrepreneurship.
Even in this “yesterday was five minutes ago” digital media landscape, time will tell. In the meantime, patients enticed by the promise of a cure will continue to share.