PatientsLikeMe Empowers Patients Across the Health Care Landscape

Health information sharing web site helps connect patients among more than 2500 conditions.

Health information sharing web site helps connect patients among more than 2500 conditions.

When a patient is diagnosed with a disease as serious and debilitating as multiple sclerosis (MS), they are often fearful of the disease course and, without proper guidance or knowledge, about what their future may hold.

Fortunately, there are online platforms patients can utilize to gain the knowledge necessary for navigating and managing their disease. One such platform is PatientsLikeMe (PLM), which covers more than 2500 conditions among approximately 350,000 members.

PLM is a web site where patients can share as little or as many details of their disease course as they desire in order to learn from each other about what they can expect from their own disease.

“PatientsLikeMe is a free network for people living with life-changing illnesses to come and connect with one another,” explained Paul Wicks, PhD, vice president of Innovation at PLM. “[People can] find other patients like them to contribute data about how they’re doing over time, what type of treatments they’re taking, what their experiences have been on those treatments, the symptoms they’re having, in order to get a better understanding about how they’re doing in their illness.”

That data contributes to research efforts that help leaders in health care make better decisions for superior patient outcomes. The findings also help researchers learn more about patient conditions and treatment in order to advance science, according to Wicks.

“It allows the members that join to be as engaged as they want or to use it as a learning tool and a learning platform to better manage their conditions,” said Michael Evers, executive vice president of the Consumer and Technology Group at PLM.

Patients who join the web site fill out a patient profile where they are welcome to share their experiences with a particular disease. While the site offers a wide variety of patients comfort and knowledge about their respective diseases, for patients with MS it has been particularly helpful.

“I used to think, ‘I can’t believe people do this every day and talk to strangers every day,’” said Jackie Anderson, a patient with MS. “I was incredibly skeptical, and now I cannot tell you how many people I’ve met in person. It has dramatically changed my life. As far as having a progressive illness, I can tell you 90% of what I do know is from PLM, not neurologists.”

The way PLM works is fairly simple. Patients create an account and can share as many or as little details about their experiences as they feel are necessary.

They also have the option to fill out a patient reported outcome (PRO) measure, a questionnaire that has been validated by physicians and is used to systematically collect data about patient progress.

These reports are collected and used for scientific purposes in order to find new ways to make patient lives more manageable.

“So if you just ask people to complete in open textbooks about how they’re feeling today, you could read that and understand that for 1 or 2 or 3 people, but you couldn’t actually crunch that data for hundreds of thousands of people,” explained Wicks. “So if we were to fill out a PRO, say for people who have MS, and that had questions about their walking, their speech, their vision, their sensory functioning, we could actually be able to draw some scientific conclusion about how the population is doing and any changes that might take place.”

Patients also have the option to share their progress with physicians and caregivers by inviting them to become a part of their care team on the web site. This allows physicians and caregivers to get a different perspective on patient progress.

“We certainly believe that it improves care, though I wouldn’t want to speak for a physician and how they’re utilizing the site. But I think it allows them to better understand what their patients experience in between those critical office visits,” said Evers.

PLM offers patients a way to actively get involved in their care by consistently reporting and recording their results for scientists, physicians, and other patients to see. Patients who do so on a regular basis receive a star rating on their profile. A 3-star rating is the mark of a reliable user who consistently reports his or her progress.

“It’s sort of a social reward, like recognition that by sharing your data, you’re contributing towards helping other people understand what it’s like to live with that condition,” Wicks explained.

Patients are encouraged to update their profiles at least every 90 days in order to remain an active member on the site; however, some patients check their profiles on a twice daily basis, such as Anderson, who contributes to the site each morning and each night.

Not only does PLM offer patients insight into how to manage their diseases, but it offers them solutions to problems they may be having regarding their respective disease state. For example, a patient may have found that the combination of yoga and massage helps with muscle cramps, which may be difficult information to ascertain from a doctor.

By sharing this experience on PLM, patients can find solutions to everyday problems that are difficult for doctors not living with the disease to advise patients on.

This feature helped Anderson in particular, who found through PLM that many patients with MS were swapping their disease modifying drugs for low dose Naltrexone, an unlikely therapy for MS symptoms that many doctors neglect to suggest to patients.

“I have not had a relapse since I started taking it,” Anderson said. “I’m spending $22 a month. A couple hundred people on PLM are taking it.”

Not only did the regimen help Anderson to recover from relapses, but it saved her from the financial burden of costly medications that would have cost her upwards of $3000 per month without insurance coverage.

PLM has helped patient populations in additional ways, other than providing a platform for patient engagement.

“We have a couple of programs, we try to take everything we do back to the patients and the members,” Evers said. “We have programs like PLM in Motion that allows them to participate in their communities and maybe raise funds for their particular nonprofit or their condition cause that they’re most interested in.”

PLM helps in other, more scientific ways as well, with regular studies taking place that patients on the PLM site can get involved in. One such analysis was a Biogen study that sent FitBits to 250 patients with MS to monitor their mobility over a one-month period of time.

The study was largely successful, with patients reporting improved mobility and, in some cases, significant weight loss.

“A couple of interesting things happened. First of all, is that most people were able to activate the device successfully and use it and sync up the data,” Wicks said. “There are really 2 aspects of this. One is the research, so we found very strong correlations between the number of steps that people were taking each day and the patient reported outcome scores on the walking part of the MS Rating Scale. The second aspect was more to do with how it became a wellness tool that patients could use.”

Patients would log on to PLM to report their goals and improvements with the FitBits, oftentimes strategizing with one another in order to set and meet their goals.

“It’s really about the degree to which the tool empowered people to take better control of their condition,” Wicks added.

PLM also offers its services through a partnership with Walgreens, where patients can see the potential side effects as they are reported from other patients like them living with their condition.

“There is no cost to either our members or Walgreens customers or Walgreens.com members,” Evers said. “How it works is you can login to Walgreens.com and there is a series of tiles that allow you to get information on patient-reported information on treatments and symptoms. They can use that information to give them some insight about medications they might be on or may be prescribed, and other therapies.”

The partnership has yielded much success in bringing patients the information they need in order to avoid harmful side effects and manage their care to the best of their ability.

Certainly, PLM has provided a channel for patients to become more involved with their care. But not only does the site empower patients, it allows them to connect on a more profound level and support one another through one of the most difficult times in their lives.

Among the 2 most important messages Anderson can give to patients just diagnosed with MS, she states joining a web site and seeking out information about low dose Naltrexone are the top tips she would give; 2 things learned just from spending time on PLM.

Sites like PLM not only provides patients with a platform for learning and sharing experiences, it also allows their voices to be heard in a way that has previously been ignored. As PLM expands, it will continue to empower patients and allow them to take a more active role in their care.

“I think really the evidence would suggest that when people become more activated and they take more responsibility and they’re trying to take more control of their health, they have better outcomes and they make better decisions,” Wicks said.

For more information, click here to visit the PatientsLikeMe web site.