Stacey Tinianov

@coffeemommy

Education, advocacy & community building. Runner. Cyclist. Coffee drinker. Gardener. Wife. Mom. Breast cancer. Advocacy & Engagement 💗

Santa Clara, CA
coffeemommy-at-work.blogspot.com/p/blog-page.ht…
Vrijeme pridruživanja: ožujak 2009.
1.285 fotografija ili videozapisa Fotografije i videozapisi

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  1. Prikvačeni tweet
    30. svi 2019.

    Six. My six year Cancerversary. Celebrating with a trip to to learn the latest & greatest in the realm of clinical oncology & to spend time with some of the amazing advocates I've met since that day, six years ago. 💖

    18 replies 9 proslijeđenih tweetova 145 korisnika označava da im se sviđa
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  2. 4. velj

    I am a six and a half year cancer survivor. I am a patient advocate. I am a research advocate. I am a policy advocate. I am a voice for people who have had their voices cut short by cancer. I am a bridge builder and a needle mover like the others in these photos.

    , , i još njih 7
    8 replies 34 proslijeđena tweeta 161 korisnik označava da mu se sviđa
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  3. 1. velj

    Amazing way to start a Friday & end a long week - chatting advocacy, engagement, co-design & collaboration in health care w/ . (Wondering if ears' were burning - you were all fondly mentioned!)

    3 proslijeđena tweeta 21 korisnik označava da mu se sviđa
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  4. 30. sij

    Update: Went to doc b/c he rebounded & then regressed. Lungs are good. O2 sat a little low but not scary. Glands swollen but not crazy. Sore throat. New doc said, "If he's not better soon, maybe we should look at mono." I said, "We're here, run the test." And we have a winner. 😕

    8 replies 10 korisnika označava da im se sviđa
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  5. 28. sij

    This makes my heart happy! was one of the 1st places I visited after my mom's diagnosis. When I was diagnosed 4 mths later, I knew they were a trusted site for information (which means a lot online!). Delighted to now be working with them in partnership.

    Gathering your medical records and imaging files can be overwhelming, especially when living with . Learn how can make it easier to gather and organize all your medical records into a secure online profile, at no cost to you.
    1 reply 4 proslijeđena tweeta 22 korisnika označavaju da im se sviđa
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  6. 27. sij

    Remember when your kids were tiny and you felt so helpless when they were sick and you couldn't really do anything but try and rock them to sleep? Ya. Well, now my baby is 17 years old and 6'2" tall - same helpless feeling but he's too big to fit in my lap and rock to sleep... 😕

    5 replies 38 korisnika označava da im se sviđa
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  7. 27. sij

    THIS! Access and Choice. TY & TY Now let's make it so.

    : It’s about access and choice. Patients should be able to access their health records at no cost. is the first step.
    1 reply 4 proslijeđena tweeta 9 korisnika označava da im se sviđa
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  8. 24. sij

    There are times when the universe just helps you connect the dots. Spent 15 mins listening who totally "gets it", went up to thank him & discovered our connection. And then our connection. And our connection. 🙃

    5 proslijeđenih tweetova 31 korisnik označava da mu se sviđa
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  9. 24. sij

    Just THIS. (Which is HUGE!) Thank you cc:

    2 proslijeđena tweeta 6 korisnika označava da im se sviđa
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  10. 24. sij

    Only issue with presentation is the title of this slide. Not research AROUND the patient. Let's do research WITH the patient. Partners. Or, as Dennis Slamon refers to us... colleagues.

    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  11. 24. sij

    "The innovative idea here isn't the hard part, it's the willingness to adopt. To change." on clinical trial design evolution. Amen.

    1 reply 4 proslijeđena tweeta 9 korisnika označava da im se sviđa
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  12. 24. sij

    "You are eager to invite patients to the table but what you don't realize is that it wasn't your table to begin with," quoting the infamous about clinical trial and research design

    6 proslijeđenih tweetova 7 korisnika označava da im se sviđa
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  13. 24. sij

    YES! A evolution in research participation. "A renaissance of engaging with patients as those trials are bing designed. But inconsistent."

    1 proslijeđeni tweet 5 korisnika označava da im se sviđa
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  14. 24. sij

    +1 "Technology may exacerbate disparities unless we implement the right new solutions." ~ Indeed. A huge education and access lift in the community.

    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  15. 24. sij

    +1 for access to QUALITY care. "Quality = Right Care. Right Person. Right Time. Driving Outcomes." ~

    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  16. 24. sij

    "Progress vs. Perception" Telling that this man, CEO of is presenting in the Patient Track. Patient centricity runs deep with this one. Photo credit

    2 proslijeđena tweeta 13 korisnika označava da im se sviđa
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  17. 24. sij

    YES! "Access" includes education... MUST include education! "There is no informed decision a patient can make if she doesn't have basic understanding of genetics." ~

    1 proslijeđeni tweet 4 korisnika označavaju da im se sviđa
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  18. 24. sij

    THIS. "Unless there's participation from diverse communities in research, we cannot ensure the research results apply to these communities." ~ Lisa Goldman Rosas of SPHERE "And you need to include those voices from the very beginning!" at

    1 reply 4 proslijeđena tweeta 14 korisnika označava da im se sviđa
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  19. 24. sij

    Now at with another leader Ysabel Duron, founder of both and, most recently, Latino Cancer Institute "Are we as diverse as we need to be? Not yet."

    Korisnici , i
    1 proslijeđeni tweet 3 korisnika označavaju da im se sviđa
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  20. 24. sij

    Talking Retention, Trust, Return of Results & all things person-centered research w/ the amazing Community Engagement Advisory Board. Honored to be a part of this team. If you're interested in participating & moving research forward, check out

    , , i još njih 4
    2 korisnika označavaju da im se sviđa
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  21. 24. sij

    Hmmm... Let me help Rajiv of with that answer... "interested in sensor data from wearables and the sensor data THAT PEOPLE CHOOSE TO SHARE from their connected devices." Thanks. Much better.

    In response to what data is highest on your wish list, Rajiv Bhan of answers, “were interested in sensor data from wearables and the data we can get from connected devices.”
    2 korisnika označavaju da im se sviđa
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