At PatientsLikeMe, we strive to put the interests of you, the patient, first in everything we do. After all, you are the customers of the healthcare industry, and you deserve to have a say about the products and services created for you.
Unfortunately, your needs and opinions often haven’t had the influence on the decision-making processes of insurance companies and pharmaceutical manufacturers. Medical providers have often underserved you in favor of competing interests and more revenue.
The good news is times are changing. Your voice, the patient voice, is coming to the forefront, where it should be. Every day new companies approach us asking, “How can I connect with patients? I need to know what they think and what they’re feeling. I want to improve their health outcomes.” These are the partners we want to work with because they are committed to using your insights to change the very nature of healthcare. And their numbers are growing.
Here are two examples of how you have already impacted their decisions:
- How do we make this treatment easy for patients to use? A pharmaceutical manufacturer approached us with several options for a new drug’s packaging. Over 650 of you spoke up in a survey, picking the most user-friendly choice based on your experience. Guess which packaging the pharmaceutical company went with? The one the majority of you liked.
- How do we help patients distinguish their symptoms? Another pharmaceutical company wanted to help patients like you understand your symptoms better so you could seek appropriate treatment. By partnering with PatientsLikeMe, they found the solution. 58% (n=221) of patients like you surveyed said that the tools developed by PatientsLikeMe helped you better understand your symptoms and outcomes. That insight has led to even more projects – and they really want to hear from you now!
Thanks to all of you who gave input in these surveys. There will be more opportunities to be heard soon, so keep it up. The world is finally listening!
- Filed Under: ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases, Treat Us Right
- Tags: drug packaging, graham, healthcare industry, insurance companies, partners, PatientsLikeMe, pharma, pharmaceutical manufacturers, surveys, understand symptoms
Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others. Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica® and Eli Lilly’s Cymbalta® as prescribed treatments for your fibromyalgia.
PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta. Here are three key insights we learned:
- Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell. By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy.
- Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly.
- Many of you attribute weight gain to Lyrica. In fact, of all side effects reported for either treatment, weight gain on Lyrica was the most frequently reported. By contrast as shown below, Cymbalta patients on our site did not frequently report weight gain as a side effect.
So what makes this data interesting?
- There remains a clear unmet need for developing better treatments in fibromyalgia. Based upon your real-world experiences, the existing treatment options are effective for only a minority of patients but cause side effects in a majority of them. Developing new solutions for fibromyalgia that improve upon the safety and efficacy of existing treatment options remains an opportunity.
- This data provides important insights for those of you using – or considering using – one of these treatments. From what you’ve shared with us on PatientsLikeMe, we see that Lyrica patients more frequently report both major efficacy and severe side effects than Cymbalta patients. Additionally, you frequently report experiencing little to no efficacy on either treatment. One of the major benefits of sharing is how much it helps others like you know what to expect and whether or not an experience on Lyrica or Cymbalta is normal.
- This data illuminates similarities and differences between clinical trial data and real-world data. For example, weight gain in fibromyalgia patients was listed as a side effect in Lyrica clinical trials. However, other side effects were more frequently reported in Lyrica clinical trials than weight gain, including dizziness, somnolence (daytime sleepiness) and headaches. By contrast, your real-world experiences put weight gain atop the list of Lyrica side effects on PatientsLikeMe. It’s important that we continue to develop a deeper understanding of the factors driving these similarities and differences in clinical trial data and real-world data.
Learning about the impact treatments have in the real world is only made possible by patients like you who embrace openness and give selflessly to other patients on PatientsLikeMe. You are proof positive that the voice of one patient can become the voice of many, and that your real-world experiences are not only meaningful – they are essential to understanding what works, what doesn’t, and what needs to be improved.
You keep on saying it and we’ll keep on relaying it: Treat Us Right.
- Filed Under: Chronic Fatigue Syndrome/ME, Fibromyalgia, Openness, Research, Treat Us Right, Viral Series
- Tags: cymbalta, efficacy, Fibromyalgia, fibromyalgia community, fidyk, lyrica, side effects, treat us right, weight gain