FLF Webinar on Health Data

The Follicular Lymphoma Foundation's next webinar will be "Your Health Data: How It Powers Research." It will happen on Friday, March 27, at 7am PT / 10am ET / 3pm UK / 11pm UTC. 

As with all of the FLF webinars, this one will feature a Lymphoma expert and a patient or caregiver. The expert is Dr. Peter Martin from New York Universioty Langone's Perlmutter Cancer Center in New York City. He is active with a group that promotes clinical trials for Lymphoma. The caregiver is Cris Carrigan, whose wife was diagnosed with breast cancer. He also has a professional background in cancer data. He is involved with a charity in the UK called  Use MY Data, made up patients, relatives, and caregivers who encourage cancer patients to allow their data to be used for research.

Use MY Data is an interesting organization. They don't hold any patient data. They encourage patients to allow their data to be used in clinical trials and other research. I don't know of any similar organization in the US.

The fact that such an organization even exists says something important.

I completely understand patients' reluctance to share their data. We live in a world where our data of all kinds -- financial, personal, medical -- is in danger of being stolen or shared. And we want to keep it close. Like I said, I understand. I've been given opportunities to work on certain projects that seemed interesting, but then I was told my medical records would need to be accessed. I backed away. I'm happy to share information if I have a good sense that it's going to help others (that's the whole point of this blog, after all).  But I'm crazy about the idea of giving unrestricted access to my electronic health records, especially if I'm not getting clear answers about how it will be used.

But that doesn't mean I would never share it under the right circumstances. If there was data that I thought would be helpful in finding a cure or helping other patients, I'd absolutely share it.

Think about it. If there were a large database of patient information that could be accessed by researchers that could help them better understand Follicular Lymphoma, wouldn't that be great?

That's where a group like Use MY Data comes in. Their mission is to encourage data use, but also to promote responsible and accountable use. 

Still skeptical? Understandable.

Then attend the webinar and see what they have to say.  And if you can't attend live, remember that recordings of all if their webinars are available later on.

I think it's going to be a very interesting session.