Home » Advocacy » Ah, the life of a research advocate …

Ah, the life of a research advocate …

Life as a lung cancer research advocate can require a lot of travel. This week I’m in Washington DC for two meetings.

Monday I participated as the sole patient advocate in the National Cancer Institute’s Small Cell Lung Cancer (SCLC) working group meeting, along with some of the top US researchers in this disease. The meeting will provide fodder for the NCI’s report to Congress about the Recalcitrant Cancers Act.

Thursday I’ll be one of several patient advocates at the National Institutes of Medicine for a meeting on data sharing, along with medical institutions, pharma, and healthcare payers. Data sharing in the electronic age involves more than just who can see your medical records. We patients and family members have already participated in several phone calls in preparation for this meeting. It will be interesting to hear what the other stakeholder groups think are the main barriers to data sharing, and what we should do about them.

In between, I’m trying to get caught up on expense reports and writing projects while adjusting to a new time zone. I hope my inputs make a enough difference for patients to make the travel worthwhile.

3 thoughts on “Ah, the life of a research advocate …

  1. Only you can say if it is making “enough” difference to make that travel worthwhile, but I can say you have hundreds of patients grateful for the difference you are making. I think about all the young lives and future lives you are impacting and bringing hope to through your work. A true superhero.

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  2. May you be blessed for representing us. Thank you. Thank you. Gale

    On Tue, Feb 5, 2019 at 11:15 AM Gray Connections wrote:

    > Gray Connections posted: ” Life as a lung cancer research advocate can > require a lot of travel. This week I’m in Washington DC for two meetings. > Monday I participated as the sole patient advocate in the National Cancer > Institute’s Small Cell Lung Cancer (SCLC) working group meet” >

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