Without looking too far forward I think we all can see a day where patients have the ability to see how different decisions they make directly impact their health outcomes. I don’t mean in an abstract sense, but rather in a practical way that can change day-to-day decisions about nutrition, exercise, medication choices, and doctor visits.
Aligning Patients and Industry is Possible
Calling the path to getting to that nirvana “the easy part” would be insane until you compare it to trying to create a thriving and responsible business out of this endeavor. PatientsLikeMe is attempting to do just that. The key is being responsible in the decisions we make as we move forward. We must not only adhere to our core values, but also select the “right” partners.
Our partnership objectives are to work with companies dedicated to optimizing health outcomes through the use of real-world, patient-reported data. This means that companies have to value patient experiences, believe that patients understand their health decisions, and regard patients as partners in obtaining the shared goal of improving outcomes.
No Race Car
As easy as that sounds, the devil is in the details. The revenue model of choice for social media is advertising; and as we’ve indicated many times before, there is no advertising on PatientsLikeMe. Our choice is to maintain the sanctity of our user experience without turning our site into a “race car.” This leaves us the option of selling the data that patients provide to us so that stakeholders in health can learn from their experiences.
How Can We Learn?
Data is the key to learning. Translating that data into actionable information for companies that are trying to maximize their profits while still keeping the patients’ interests at heart has been our biggest business challenge yet. Of course, all companies insist that they’re in business to help patients, but in all honesty, there are clear leaders in that regard—organizations that act on the ideals of the company revering their core values as more than rhetoric for annual reports.
We learn as much from these companies during the partnership development process as they learn from us. Should we work with them? Will this company value the same things that we value? Can the patients really be first in their decision-making when faced with tough business decisions? We evaluate potential partners on these parameters as well as their ability to create positive change for patients quickly.
The Goal: Measure Everything For Poeple’s and Industry’s Benefit
One way we measure this ability is how much data is fed back to patients based on partner research conducted on our site. Although some of that information is proprietary, companies that share some interesting nuggets with the patients that supplied the data create a sense of goodwill and encourage greater participation in further studies. Patients feel like they have a direct impact on companies interested in their disease and clearly know that their voice has been heard. To us, that’s what the business of healthcare must be: a responsible dialog between patients and industry focused on serving unmet needs today and creating better treatments and cures for tomorrow.
We aspire to these goals and practice them daily. We continue to turn away business opportunities that don’t feel right. We do this for the patients who put their trust in us; that if we collect the best data on the patient experience, put the patient squarely in the center of their health decisions, and provide unprecedented insight into this experience for industry, PatientsLikeMe will be wildly successful. Our success is the patient’s success.
First let me say that I will deleting my acct.
I can appreciate that you earn money. It is obvious to me as I have read the many blog posts and comments about this issue that you could have been much more explicit in telling members about your business model. You weren’t. And it has now bitten you.
funnyhaha,
Thanks for your comment and that you can appreciate that we earn money. It seems that our efforts to be completely transparent about our business model were not good enough for you. We regret that you haven chosen to leave the site.
That said, we have many members who joined PatientsLikeMe fully aware that we are a for-profit company and welcome the fact that we sell data to keep the site and free and to engage pharma companies so they can learn from patients’ experiences. In fact, less than 1% of members have chosen to close their accounts as a result of this incident. Many have praised our openness and transparency, but we clearly must do a better job so people like you know up front about our company and can make an educated choice whether to join.
For you, and others who may be reading, here is the language that is linked directly from our homepage about how we make money. Again, we regret you’re leaving the site, but are happy that you’re continuing this conversation.
We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format 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. 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. Our end goal is improved patient care and quality of life.
Any and all comments welcome.
David