Most of us are in the midst of holiday shopping, but if you can step outside the commercial hustle, consider giving a gift that literally keeps on giving: your health data.
That’s right — your height, weight, blood pressure reading, cholesterol, pulse, sleeping habits, reactions to medications and so on. If you search for breast cancer, for example, on the website PatientsLikeMe, you can see what percentage of patients report anxiety, fatigue, depression, pain and insomnia, along with how other breast cancer patients on the site rate the perceived effectiveness and side effects of various treatments such as radiation therapy, chemotherapy, lumpectomy and mastectomy. Once you actually become a member of the site, you can enter your own specific data, such as tumor markers, CT and MRI scan results, and reactions to specific drugs, like nausea. Most people — whether they’re in good health or suffer from an illness — don’t think of their health data as an actual asset, but in an increasingly connected world, patients’ voices are rising up through the medical establishment.
Some websites for patients are disease-specific, focusing on certain conditions — such as TuDiabetes, a bilingual website that provides forums for patients with both Type 1 and 2 diabetes, as well as parents of children with diabetes and other subgroups on diabetes recipes and foods as well as alternative treatments. Another site, The Body, provides resources and discussion forums for people with HIV/AIDS. This can be especially important because it provides a safe space for patients — who normally go by aliases — to communicate with each other, especially since communicating with others might be limited, says Francisco Grajales, a doctoral candidate in big data at the University of British Columbia. “It can be very difficult for patients to come out to family about what they are going through,” Grajales says.
PatientsLikeMe, an organization started in 2004 by three engineers, provides a platform for patients with various conditions to engage with each other about their medical conditions. On Dec. 2, it launched “24 Days of Giving,” a campaign focused on encouraging people — both healthy and sick — to share their data. On the group’s website, people can enter their health data, and those suffering from particular conditions can find others with the same conditions.
PatientsLikeMe prides itself on putting patients’ needs first, and it was inspired by the brother of two of the co-founders. Stephen Heywood was diagnosed with Lou Gehrig’s disease, a debilitating neurological condition that is fatal, at age 29. His family, including the two brothers who would establish PatientsLikeMe, searched the world for treatments and care to help their brother. They realized that a lot of information that would have made Stephen’s life easier was hard to find — questions like, “How do you brush your teeth when you’re on a ventilator?”
PatientsLikeMe, unlike other websites, is also very data driven. At the website, you can immediately type in a condition or symptom and go to a fact sheet-type page that includes the number of patients suffering from the given condition, severity of symptoms, preferred treatments and other information. “The challenge is to take these beautiful stories and turn them into quantifiable data,” says Jamie Heywood, one of the founders of PatientsLikeMe.
Patient Learn Best From Other Patients
Three years ago, Garth Callaghan, 45, of Richmond, Virginia, was diagnosed with metastatic kidney cancer, a rare disease with treatments that cause troubling side effects. “Although I love my doctors to death, I didn’t have good guidance from them,” he says. He found PatientsLikeMe and started sharing his data — on treatment side effects, his sleep habits and mood. He learned from another patient that taking one teaspoon of Metamucil every day cured him of the chronic diarrhea associated with one of his treatments. Callaghan says he also learned how to balance food intake with medications, fight nausea with ginger snaps and meditate to fall back asleep after waking up with severe side effects.
For Letitia Browne-James, finding PatientsLikeMe was also a lifesaver. The 33-year-old from Orlando, Florida, had suffered off and on from epileptic seizures since she was 5 months old. By the time Browne-James was in her mid-20s, her seizures had worsened, and none of the several medications doctors recommended were working. “I got frustrated with my last neurologist, and I came across the website and joined out of desperation, not realizing it would change my life,” she says.
For a couple years, Browne-James tracked her seizures, medications and dosages, and even her menstrual cycle. From other patients on the site, she learned about a 72-hour EEG, which none of her doctors had ever ordered. She also learned about epileptologists — neurologists who specialize in epilepsy. She found one in her area who monitored her in a hospital for a week, during which time she stopped taking her medications to allow the seizures to occur so the doctors could gather good data. At Browne-James’ follow-up appointment, the doctors told her she was a perfect candidate for epilepsy surgery. Patients on the website who’d had surgery reported a high success rate, so she felt even more encouraged to undergo it.
On August 16, 2012, Browne-James underwent the surgery, and she’s been seizure-free ever since. She continues receiving a lot of questions from others on PatientsLikeMe about the surgery and sharing her health data on the website.
“If you contribute your data, that’s contributing to research,” she adds.
Helping Others Is Therapeutic
Helping others is another benefit of using patient-driven websites. While most of us are probably familiar with the feel-good effect of helping others, when you’re sick, that magnanimity takes on new meaning.
“I stopped thinking about my crappy illness because I was focusing on others,” Callaghan says. “It is truly very therapeutic.”
“When you’re ill, you sometimes lose your ability to be productive. By giving your data, you are helping other people,” Heywood adds. He says it’s actually when we become vulnerable, either through experiencing illness directly or taking care of those who are sick, that we realize “the human condition is one of intrinsic generosity,” and this undercuts a lot of the fears associated with breaches of privacy. “Privacy as a right is important,” he continues. “Privacy as a goal — we should be cautious about pursuing it.”
Even for healthy people, donating data poses intrinsic value, Grajales says. “I think people need to understand that donating data is equally as valuable as volunteerism, with the right safeguards in place for privacy.”
Benefits of Sharing Outweigh Risks
And that’s how a lot of patients using the website feel. According to a survey of 2,125 PatientsLikeMe users conducted by the Institute of Medicine, 94 percent were willing to share their health information to help other patients with their same condition, as well as doctors and researchers. A similar percentage believe their own data should be used to improve the care of future patients with similar conditions.
However, a significant percentage — 76 percent — believe their data could be used without their knowledge, in such a way that could deny them both health benefits and job opportunities.
“The magnitude of the ‘yes’ is much greater than the potential uncertainty,” says Grajales, one of the authors of a paper published last January by the IOM journal Perspectives. Grajales says the results reflect a “moral question” that patients, even feeling the potential risk associated with sharing their data, are still more willing to share it than not.
Grajales adds that “the fear is there, but people realize that they can’t really control it … Sharing their [medications], side effects, mood, co-morbidities … it allows them to have a conversation where they have no hierarchy like there is with a doctor.”
“I think this is the future [of medicine]. I think the medical establishment is going to be forced to accept it,” he continues, adding that these websites provide an immediate and large patient sample that would take years to accrue at individual institutions. So this kind of information can also be useful for doctors and researchers, he says. “[PatientsLikeMe] is really democratizing the power in patient-doctor relationships to improve care.”
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How Sharing Your Health Data Can Help Others originally appeared on usnews.com
