6 posts tagged “patient experience”

Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

Posted December 18th, 2017 by

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad).

If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus.

A mix of symptoms

Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects.

“I was really flaring…”

PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just a couple of the forum posts researchers highlighted.

Living with more than lupus

“…and then I had a flare of lupus, RA and Sjogren’s that still has not gone away,” one member wrote in the forum. Many members who’ve discussed their flares have also shared which other conditions they’ve been diagnosed with in addition to lupus.

If you’re living with lupus, how would you describe what happens during your flares? How long do they tend to last? Do you have other conditions that make your flares worse or hard to identify? Share your experiences here, or — even better — join PatientsLikeMe to learn from and connect with nearly 30,000 people living with lupus.

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A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Posted April 11th, 2014 by

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and President Ben Heywood talks more about the work ahead.

So, why Genentech? What do you hope to achieve through this partnership?

Genentech is a leading biotech company and an acknowledged leader in oncology (which is where our initial focus will be).

We spoke with their teams for quite some time before embarking on this collaboration and I have to say that we just really like their approach. We’re very much aligned in our goals of defining a more patient-centric approach to research, development, and care delivery.

Their goal in working with us is to explore the use of our PatientsLikeMe network to develop innovative ways of researching peoples’ real-world experience with disease and treatment. I think we also hope and expect this collaboration will encourage broader engagement of others involved in the delivery of healthcare to support a stronger voice for patients like you.

How does this differ from your other collaborations?

What’s different with Genentech is that we’ll be exploring on a broader scale how the use of our patient network might develop new ways to research the patient experience. The broader access should allow for more agile, real-time use of the data and help align the strengths of the platform with Genentech’s priorities. This collaboration also helps PatientsLikeMe expand our cancer community, and we’re excited to be partnering with such a leader in oncology research and development on that.

How does this move “put patients first?”

Genentech is a forward-thinking company that is continuously working to patients at the center of their decision-making. By providing Genentech access to the health data shared by the members of our network, it will help them learn more from patients like you and better integrate your insights into their decision-making as they develop new medicines.

Is the focus on cancer new for PatientsLikeMe?

We have a community of people with cancer that have been using the site since we opened it up to people with any condition in 2011; many right now list cancer as a secondary condition, although some list it as their primary. Part of this collaboration is about using resources to enhance the tools within our network to help make the site even more useful for cancer patients. Of course what we build for one community will benefit all, much like we’ve done all along. The end result is a website that better serves people’s needs.