2 posts tagged “Giving Tuesday”

PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

Posted December 1st, 2015 by

The Gift of Health Data Can Help Others, and Advance Research

CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of new and existing members answered the call by contributing treatment evaluations, symptom reports and other health updates. But they didn’t stop on the first day of giving. They shared their data over the course of the entire month, and continued to do so this year. I hope others will join us again so that everyone has the best information to make decisions, and we can continue to bring real-world perspectives to research.”

PatientsLikeMe plans to give back in several ways during the campaign. While it returns study results back to participants as quickly as possible, the company will once again showcase some of the most important research that has benefited from patient data in the last year and beyond. It’s also making a donation of up to $20,000 to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Members use PatientsLikeMe for a range of reasons. For some, tracking their condition is the most vital. Allison talks in this video about living with bipolar II, and how she uses PatientsLikeMe to track her moods. “I haven’t had any episodes in the last five years because I have the data to link all the pieces together. I’m prepared because of PatientsLikeMe.”

Gus, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), contributes his data to make sure others like him have a game plan for living with the condition. “The person who has just been diagnosed isn’t thinking about anything else. Their head is spinning. I want to create a manual so that others can understand what’s working for me and anyone else living with ALS, and make educated decisions to improve their quality of life.“

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and non-profits develop more effective products, services, and care. With more than 380,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Join Garth Callaghan for 24 Days of Giving

Posted December 2nd, 2014 by

Today’s the day we start to re-think what it means to give back, and we want you to come along with us. We’re kicking off 24 Days of Giving – a new campaign that’s all about the health data PatientsLikeMe members selflessly donate and how we can say thank you.

Today is also known as Giving Tuesday – a day that celebrates generosity. We’re hoping that after you celebrate by giving a donation of time or money to your favorite non-profit, you’ll consider coming back to PatientsLikeMe to donate your data. For every piece of health data you share on PatientsLikeMe over the next 24 days, we’re going to donate up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Not a PatientsLikeMe member yet? Join the community and start donating your #dataforgood. Already a member? Head to your 3-stars page to make an update and data donation.

Leading the charge- Garth Callaghan (@NapkinNotesDad)

Some of you might know Garth as the Napkin Notes Dad. He’s been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. But he doesn’t dwell on that. Garth takes each day as a gift and has fulfilled a promise he made to write 826 napkin notes. Emma will have one waiting for her in every lunch until the day she graduates.

Garth’s personal legacy is his words, and on PatientsLikeMe, his medical legacy is his data. He’s sharing his experiences in the hopes that others can learn from his journey and help fight their own battles better.

“It certainly doesn’t help me to keep my symptoms or my side-effects secret. I feel that I owe other patients my experience. If I donate my data, if I share with an organization that can put it together and see a pattern … I’m helping all of the patients.”

We’ll keep everyone updated on the 24 Days of Giving drive, so keep an eye on our
PatientsLikeMe Twitter and Facebook. Want to share about the data you’ve donated with others on social? Use the hashtag, #24DaysofGiving.

Share this post on Twitter and help spread the word.