Patients Like Me

PLMTwitterThe diabetes world is familiar to me. I know where to get the latest information on research, which blogs cover certain topics, where to connect with others, and who to talk with to get a different perspective on daily management. It’s comfortable. It’s safe.

I’m a local.

I have been offered and gladly accepted a ticket to travel for the next year into another world… or worlds, as a member of the 2015-2016 Team of Patient Advisors for PatientsLikeMe. My exploration into other patient communities and what it means to be a partner will send me into unfamiliar territory. I have no map. I have no frame of reference.

I’m a foreigner.

But I have travel companions – my new partners. And that’s what this year’s Team of Advisors is all about. These partners are 13 incredible individuals who willingly share their data, their experiences, their strengths, and most importantly, stories of their journeys. We’ll be examining the definition of partnerships in healthcare, then creating resources and ways for partnerships to blossom between industry, researchers, health professionals, and patient communities.

What Is PatientsLikeMe?

PatientsLikeMe brought the team together to their Cambridge headquarters for an intense initial meeting. The founders, Jamie and Ben Haywood, began Patientslikeme to find a cure for ALS (their brother, Steven was diagnosed at 29.) When they talk about their brother and why PatientsLikeMe is important to them, the passion is palpable. Despite the fact that Steven passed away, Jamie still talked about him in the present tense in our meeting. (I’m not sure he even realized he did that.)

Here’s Ben, sharing the story of PatientsLikeMe at TEDxCambridge:

Not content with gathering research data for just ALS, the site now allows for tracking of thousands of conditions. Members can input their data and instantly update how they feel. Daily tracking for most conditions can help show trends that can be helpful in medication dosing. The forums for many conditions allow members to talk about what works for them and what doesn’t. For many chronic illnesses, the data shared can help researchers and companies provide better drugs, examine how clinical trials are run, and if  organizations are asking the right questions.

FDA and PatientsLikeMe

They’re collaborating. Yep. This makes me do a happy dance. Patient reported data is necessary. Aggregated patient reported data is sometimes hard to access. PLM (PatientsLikeMe is helping.) Here’s the gist:

PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management.

Where Do They Get The Money to Run PatientsLikeMe?

This is the reason why I love what they’re doing… they are firm believers in transparency. Straight from their website FAQ page (and easily found…):

We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.  Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.  We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

By selling this data and engaging our partners in conversations about patient needs, we’re helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.

PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude).  Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.

All too often, we question motives in healthcare. (How many times have you heard: “There will never be a cure for diabetes because there’s too much money being earned by companies treating it…”?) By openly sharing their intent and not hiding, I want to help. So I am.

Who is on the Patient Team of Advisors?

Back row (left to right): Doug, David, Jeff, Craig, Allison, Laura, Angela, Cyrena Front row (left to right): Patti, Peggy, Phyllis, John, Gus, and me.
Back row (left to right): Doug, David, Jeff, Craig, Allison, Laura, Angela, Cyrena Front row (left to right): Patti, Peggy, Phyllis, John, Gus, and me.

Men and women from across the country with different life experiences, strengths, and conditions. ALS, MS, Type 1 diabetes (me!), Fibromyalgia, metastatic cancers, Parkinson’s, Bipolar II, Lupus, PTSD and depression conditions are being represented this year. We spent our time getting to know each other and learning about what makes us patients.

By the end of the meeting, our discussion was not about our individual diseases, but how we can work together to create better partnerships in the world. This big world of healthcare that encompasses much more than just patients. I’m ready to be more than a patient. I want to be a partner.

Postcards from Me

Expect to hear from me about my journey this year with PatientsLikeMe and the things I learn from my fellow team partners. Some of it will be fun – some of it won’t. But it’s important to step outside of your own comfortable space and explore. I’d love to hear from you about what you’d like to learn – so we can travel together.

People with diabetes know how to pack for a trip… so I’m ready. Off I go…

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Disclosure statement: My lodging and travel expenses were paid by PLM to get me to the kick-off meeting. This is a volunteer position and I am not paid to endorse or share information about PatientsLikeMe. My thoughts and words are, as always on this blog, my own.

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