We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time. Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.
But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.
In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)
One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.
Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!
p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative. Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.
2010 was a strong year for business development at PatientsLikeMe. Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two. Here are a few of our successes and challenges over the year.
Successes
1. New Partnerships, New Communities
In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners. UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community. Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.
As with all of our partnerships, we made sure the focus is on the patient experience. For example, what are your perceptions about the medications you take? How do you see these treatments impacting your quality of life? Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.
2. Enhanced Services for Partners
When we create products and services for our corporate partners, it’s with a single objective: to amplify the patient voice. As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly. In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.
PatientsLikeMeListenTM and PatientsLikeMeLandscapeTM
These complementary services help measure both the frequency and sentiment of treatment discussions in our community forums. In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using PatientsLikeMeListenTM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscapeTM ). Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.
Challenges
As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges. 2010 was no different. Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.
1. Guidance on Industry Interaction with Social Media
One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media. Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.
PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeadersTM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate. Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need – without fear of non-compliance.
2. Being Open About the Data Scraping Incident
In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service. Not only is that a violation of our User Agreement (“You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.
We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred. We sent a message informing all patient members, and about 200 patient members left the site as a result. In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients. We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.
Since our PatientsLikeMeListenTM product measures sentiment of discussions in our forums, we reminded our members about this similar service. We will continue to inform and educate our members about how we conduct business so there are no surprises.
Summary
In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests. In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.
Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments. Happy 2011!
