The President's Cancer Panel Wants ... ME?

Started by anonymous, March 11, 2015
11 replies for this topic
anonymous

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Posted on
March 11, 2015
When a Twitter icon indicated I had a new direct message last Tuesday, I took my time opening it. I was down with a bad case of the flu, including a fever and a cough that had stolen my voice, and I wasn’t at the top of my game. However, when I finally clicked on the icon, I felt a jolt of adrenaline.

The message was from “@PresCancerPanel” and started “We’d like to invite you to …”

I leaned forward to double check. I wasn’t hallucinating. The President's Cancer Panel had invited me to participate as a patient advocate in one of their workshops. I almost screamed "YES!", but given my voiceless state, I responded on my iPad as fast as my fingers would permit.

So, I will be flying from Seattle to San Francisco to participate in the President's Cancer Panel workshop on March 26, 2015.  The PCP's 2014-15 workshop series Connected Health: Improving Patients’ Engagement and Activation for Cancer-Related Health Outcomes aims "to answer timely, critical questions about connected health strategies and technologies and their potential to engage and activate individuals and patients, with the ultimate goal of improving cancer-related outcomes." Their December 2014 workshop had an impressive list of speakers and participants.

The workshop in which I will be participating is titled, "The Personal Health Data Revolution, Connected Health, and Cancer." It will touch on several topics of interest to me: value of patient networks, ownership of patient-generated data, changing the research process, using electronic health records for the benefit of patients, and privacy and security safeguards. I'm hopeful I will be able to make a valuable contribution to the workshop and make a difference for cancer patients.

I anticipate this workshop will address technology opportunities such as:
  • leveraging patient networks to accelerate cancer research and improve outcomes
  • acknowledging that patients own any data generated as part of their care
  • using devices such as Apple’s new ResearchKit to connect patients to their clinical trials
  • making clinical trial searches easier and more understandable
  • ensuring medical records follow the patient for second opinions and treatment at different facilities
I feel honored, and still a bit stunned, to be a patient voice at this event.  If you have any inputs or links to resources you wish me to see before this workshop, please post them in a comment.
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Anonymous

Member
0 Replies
Posted on
March 11, 2015
When a Twitter icon indicated I had a new direct message last Tuesday, I took my time opening it. I was down with a bad case of the flu, including a fever and a cough that had stolen my voice, and I wasn’t at the top of my game. However, when I finally clicked on the icon, I felt a jolt of adrenaline.

The message was from “@PresCancerPanel” and started “We’d like to invite you to …”

I leaned forward to double check. I wasn’t hallucinating. The President's Cancer Panel had invited me to participate as a patient advocate in one of their workshops. I almost screamed "YES!", but given my voiceless state, I responded on my iPad as fast as my fingers would permit.

So, I will be flying from Seattle to San Francisco to participate in the President's Cancer Panel workshop on March 26, 2015.  The PCP's 2014-15 workshop series Connected Health: Improving Patients’ Engagement and Activation for Cancer-Related Health Outcomes aims "to answer timely, critical questions about connected health strategies and technologies and their potential to engage and activate individuals and patients, with the ultimate goal of improving cancer-related outcomes." Their December 2014 workshop had an impressive list of speakers and participants.

The workshop in which I will be participating is titled, "The Personal Health Data Revolution, Connected Health, and Cancer." It will touch on several topics of interest to me: value of patient networks, ownership of patient-generated data, changing the research process, using electronic health records for the benefit of patients, and privacy and security safeguards. I'm hopeful I will be able to make a valuable contribution to the workshop and make a difference for cancer patients.

I anticipate this workshop will address technology opportunities such as:
  • leveraging patient networks to accelerate cancer research and improve outcomes
  • acknowledging that patients own any data generated as part of their care
  • using devices such as Apple’s new ResearchKit to connect patients to their clinical trials
  • making clinical trial searches easier and more understandable
  • ensuring medical records follow the patient for second opinions and treatment at different facilities
I feel honored, and still a bit stunned, to be a patient voice at this event.  If you have any inputs or links to resources you wish me to see before this workshop, please post them in a comment.
Report
Anonymous

Member
0 Replies
Posted on
March 11, 2015
Janet, Don't you dare be stunned that they picked you. You are one of the strongest, most intelligent, knowledgeable advocates that we have. I appreciate that you fight on for all of us. Congrats! Fern
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Anonymous

Member
0 Replies
Posted on
March 11, 2015
I am not at all surprised Janet. I am really excited about your participation. As you know, this is an area that I am very excited and passionate about. Please give us a report afterwards!
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Anonymous

Member
0 Replies
Posted on
March 11, 2015
I hate that you have cancer but I'm relieved you don't have stage fright! It is all the brave and well educated folks like yourself that is keeping this movement going forward. Thank you!
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Anonymous

Member
0 Replies
Posted on
March 11, 2015
Fern, Chris, and Laurie, Thanks for the votes of confidence! Janet
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Anonymous

Member
0 Replies
Posted on
March 11, 2015
The President's Cancer Panel knew what they were doing when they asked you to participate. When my husband was first dx, I called his oncologist's office to get a copy of the biopsy pathology report for a cancer policy we have. I was told that the copy would be given to me as soon as we had paid any balance due on his medical bill that our health insurance didn't cover. Our insurance had paid for the biopsy yet the oncologist's office was holding the report as ransom. I feel that a copy of all reports and tests should be sent to the patient and not just given to the doctor that ordered it.
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Anonymous

Member
0 Replies
Posted on
March 11, 2015
You go girl. You are representing us all. I am a cancer survivor and dedicating the rest of my life to providing patients (and health care providers) all of the information I can regarding advances in biomarkers and how they predict, provide early alerts and even give an opportunity to reverse or cure disease before it even develops. Mostly in diabetes and cardiovascular disease, but some of our biomarkers involve early cancer detection too. Please tell everyone that we need to also focus on disease prevention in America, and not waiting until diseases are diagnosed and then treated with drugs. Biomarkers are a piece of a new paradigm and along with other changes, we need to stop paying lip service to "wellness" and get serious about being proactive. Anyway, my 2 cents. By the way, my sister has Stage 4 lung cancer, and both of us are with you in spirit, prayer and thought. Thank you for attending on behalf of all of us.
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Anonymous

Member
0 Replies
Posted on
March 12, 2015
Continue what you are doing, I am in my 13th year of remission of multiple myeloma and really think that having access to my medical records have kept me on top of what was going on and still going on. Keep up the good work.
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Anonymous

Member
0 Replies
Posted on
March 12, 2015
Fern and the rest of you that commented are so right! Jan you are so strong and will battle for a strong voice in this fight against lung cancers.
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Anonymous

Member
0 Replies
Posted on
March 13, 2015
I cannot attend but I praying for you. I am confident that you will do a wonderful (for lack of a more sophisticated word) job. Remain blessed. I don't tweet, face, install or any if the other social mediums but would love to learn. Remain blessed, Mc
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