Tuesday, 20 December 2016

Season's Greeting!




See you in 2017!

Dee and Christina
#gyncsm Co-founder

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Wednesday, 14 December 2016

Getting Involved in Research Advocacy - Dec 14th Chat

We ended this year of chats by discussing Research Advocacy. We were delighted to have Elda Railey (@RANAdvocate), Research Advocacy Network, join us as our guest. The Research Advocacy Network's mission is "to develop a network of advocates and researchers who influence cancer research-from initial concept to patient care delivery-through collaboration, education and mutual support." Among our forty-three participants were a number of cancer research advocates. You may read the transcript here and additional analytics may be found here.

Below is a sampling of the responses we received to our five topic questions.

T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research? 
RAN Slide of Opportunities for Research Advocates



T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?







T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?






T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?






T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?





Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.


The next #gyncsm chat will be a joint chat with #mayacc on Wednesday, January 11 at 9pmET. Our topic will be "Young Adults: Life Following a Cancer Diagnosis."

Happy Holidays!
Happy New Year!


Dee
@gyncsm Co-Founder



RESOURCES

Research Advocacy Network : General Resources for research advocates
http://researchadvocacy.org/general-resources
http://researchadvocacy.org/advocate-institute

What is a Cancer Research Advocate via @CancerDotNet http://www.cancer.net/blog/2016-12/what-cancer-research-advocate

Resource | Being A Cancer Advocate via @CancerDotNet http://www.cancer.net/research-and-advocacy/patient-advocates/being-cancer-advocate 

@theNCI has a great Research Advocacy 101 video
https://www.cancer.gov/about-nci/organization/oar/research-advocacy/research-advocacy-101

8 Tips on Gaining Access to Journal Articles via @medivizor https://medivizor.com/blog/2014/12/18/8-tips-gaining-access-to-journal-articles/

scientist - survivor program offered by @AACR http://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/scientistharr;survivor-program___403E94.aspx#.WD83COErKi5

OCRFA Advocate Leader Program https://ocrfa.org/advocacy/advocate-leaders/
OCRFA Advocacy Action Alerts https://ocrfa.org/advocacy/how-you-can-help/

@NOCC_National calendar has events nationwide: https://t.co/wMkCaD09mb

PCORI peer reviewer http://www.sciencesupport.org/PCORIpeer/start/index.cfm
PCORI additional info:
http://www.pcori.org/research-results/research-dissemination-and-implementation
http://www.pcori.org/blog/how-cancer-survivors-make-difference-pcori

Sarcoma Clinical Trials http://www.curesarcoma.org/patient-resources/sarcoma-clinical-trials/

@GlobalGenes toolkits: https://globalgenes.org/toolkits/from-molecules-to-medicines-how-patients-can-share-their-voices-throughout-the-drug-development-process/introduction/
and https://globalgenes.org/toolkits/bringing-rare-disease-to-capitol-hill-advocating-for-your-cause/background-information/

Genetic Alliance Advocacy http://www.geneticalliance.org/advocacy

Welcome your new research partner: Patients https://blogs.biomedcentral.com/on-medicine/2016/12/09/welcome-your-new-research-partner-patients/

Former Rep. Gingrey's recent article on Ovarian Cancer Research http://thehill.com/blogs/congress-blog/healthcare/309680-with-no-screening-test-available-research-and-awareness-key-to

Rare Disease Week on Capitol Hill http://rareadvocates.org/rdw/

Guest column: Congress should support cancer research http://www.theadvocate.com/baton_rouge/opinion/article_3dc1fbf8-b00f-11e6-8127-9768bdfdcccd.html

@CureForward Webinar: Precision medicine and clinical trials for #ovariancancer. https://www.cureforward.com/norma-leah-ovarian-cancer-initiative/

https://clinicaltrials.gov/
https://ocrfa.org/patients/clinical-trials/

Article | Patients Attending Medical Conferences: What’s Happening? https://medivizor.com/blog/2015/05/21/patients-attending-medical-conferences-patients-included/

https://patientsincluded.org/conferences/

NCI: How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples https://www.cancer.gov/publications/patient-education/help-research-donate-tissue
  
Research news sources: @HealthNewsRevu @medivizor @PubMedHealth @Medscape  @cancernetwrk @ascopost @cochraneconsumr
 
Other resources mentioned: @patientslikeme @smart_patients @researchmatch @cureforward @ResearchAmerica @UMR4NIH @ConquerCancerFd @RareAdvocates @EveryLifeOrg
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Thursday, 8 December 2016

December Chat - Getting Involved in Research Advocacy (12/14)

In the past our community has chatted about advocating for yourself and others and about being a gyn cancer advocate. This month on Wednesday, December 14 at 9pmET (8pmCT/6pmPT) we would like to extend the advocacy topic to include how those impacted by a gynecologic cancer can become involved in cancer research and become a research advocate.

Our guest this month will be Elda Railey (@RANAdvocate) from Research Advocacy Network (RAN). You can read more about Elda, a founder of RAN, here.

We invite all those who are already research advocates and all those who want to learn about getting involved with research and becoming a research advocate to join the discussion, which will be guided by these topic questions:

T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research?

T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?

T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?

T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?

In addition to the resources found on the Research Advocacy Network site you may also visit the AACR website's page on Becoming a Advocate for Medical Research.

We look forward to seeing you on the 14th for our final chat of 2016.

Dee and Christina
Co-founders #gyncsm Community
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Thursday, 17 November 2016

Our Community - 2016 Survey Results

During September and early October we conducted a #gyncsm community survey. We were so pleased that 84 individuals took our survey. This is up from 37 respondents who completed our 2014 #gyncsm survey. We very much appreciate those who took the time to share their ideas and recommendations. Below are some highlights of the results.
 
The majority of survey respondents were Gynecologic Cancer Patient / Survivors (70.0%) followed by High Risk Individual or Advocate / Previvor (12.5%), Health Care Provider (11.25%), Caregiver / Loved One of a gynecologic cancer patient / survivor (10%) and lastly Cancer Researcher (5%).

The patient / survivor breakdown was:
  • 46.8% ovarian
  • 34.3% endometrial/uterine
  • 14.0% cervical
  • 8% fallopian, primary peritoneal, vulvar or GTD
  • 0% vaginal
  • 7.8% breast
Of the health care professionals who filled out the survey, the majority were nurses (42.8%) or gynecologic oncologists (28.5%). The remaining health care professionals were medical oncologists, radiation oncologists, researchers or genetic counselors.
 
We were interested in how followers interacted with the #gyncsm hashtag, chats and community. 43% of the respondents read the chat blog posts, 43% retweeted using the hashtag, 36% took part in a chat, 38% tweeted using #gyncsm, and 27% read a chat transcript. Less than 10% of the respondents joined us on Smart Patients platform. When asked specifically about our blog site, we found that 50% of the respondents visited our blog.

We asked which of the topics covered over the past three years were most important and these were the top five topics for survey respondents:
  1. Survivorship
  2. Advocacy
  3. Side Effects
  4. Personalized Medicine
  5. Clinical Trials and Support

When asked how they used the information from #gyncsm chats after the chat, the top response was advocating for themselves or others (58%). Also of note, 29% took part in an online support group and used a resource found in our blog posts. 

 
When we asked how we can better help the community and what topics we should discuss, here's some of what we learned:
  • Sometimes the time is either too early or too late.
  • Sometimes the chat is too quick for a meaningful discussion.
  • We should highlight other gyn cancers - endometrial/uterine, cervical were mentioned in particular. Continue to talk about clinical trials and genetics.
  • Talk about health care disparities and outcomes for women of color.
  • Talk about dealing with grief from the loss of friends.
  • Talk about sexuality after treatment.
  • Talk about what is important to younger patients.

We also asked respondents to share their thoughts on our #gyncsm chat/community and how it has has impacted their attitude toward their own health. Some of the things we heard are that #gyncsm provided:
  • Hope.
  • Made me feel part of the community.
  • Encouraged me to take more ownership in my own preventive health and advocacy for others.
  • Appreciate the range of resources offered.
  • Feel more empowered, less alone.
  • Led me to follow up more on some of my side effects and secondary challenges.
  • Wish #gyncsm could be leveraged into a new non-profit for all GYN cancers.
  • I felt like I was alone... there were no support groups near me. #gyncsm made me feel a part of a community.
But we also heard:
  • It is challenging for the hashtag to cover both advocacy/activism AND patient/survivor support - this is a common problem with other disease hashtags.
  • There needs to be more equal support for other cancers.

Lastly we wanted to know how individuals find out about #gyncsm. Respondents found us via:
  • Twitter
  • Other cancer chats
  • Facebook
  • Dee's Blog
  • From a friend
  • Researching cancer
  • Followed @btrfly12
  • NED twitter handle
  • Randomly found the #gyncsm chat
  • Smart Patients

Thank you to all who took this survey and for your continued support. We are using the information from the survey as we make our plans for next year. Remember if you have any other comments or concerns feel free to reach out to gyncsm@gmail.com.

Dee
#gyncsm Co-founder
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Wednesday, 9 November 2016

November 9,2016 Your Health Care Team


Tonight we talked about the health care professionals and allied health professionals who are part of the team involved in the care of women diagnosed with a gynecologic cancer.

We were pleased to have 26 participants join in the discussion. Additional analytics may be found here. And the complete transcript here. 

Here is a quick overview of the topic questions and responses:

T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?
  • Consider post-Cancer experts you may need (ex. fertility), & recognize team members aren't all physicians (nurse navigators)
  • my team is everyone who has helped me get through dx, treatment and now survivorship
  • You have 2 be able 2 effectively communicate w/ your care team; these shouldn't be people you meet once & trust 4 optimal outcome

    T2: Which professionals do you include in your health care team? What are some important roles to fill?

    Professionals mentioned include: 
    medical oncologist
    gynecologic oncologist
    radiation oncologist
    radiologist
    nutritionist
    genetic counselor
    social worker 
    financial counselor
    therapist
    pharmacist
    nurse (clinical trial, adv practice, treatment)
    primary care physician
    mental health support
    gyn-urologist

    Non-professionals
    those who help with insurance , bills, transportation etc
    patient groups

    T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 
    radiologists
    pelvic floor physical therapist
    medical librarian 
    pharmacist
    health coach
    nutritionist 
    palliative care specialist

    T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?
    •  T4 The role is coming more to forefront, care plan are being developed specifically for post-treatment for radonc profs
    • Historically, while they may be part of care team, radonc was not weighted in the "patient engagement" strategy. That's changing

    T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 
    • RNs have a huge role in connecting the dots behind the scenes & caring in clinics 
    • Listening skills and documentation competency!
    • Nurses are also the front line when discussing issues of fertility and sexuality

    T6: How do you handle communication and coordination between the members of your health care team?
    • I think, unfortunately, that there is still a need for patients to have their own documentation to facilitate communication
    • Patient is center of care team. Share concerns & ask questions. Improves communication & satisfaction.
    • ask your clinic what options are available: phone calls, texts, secure/HIPAA compliant email, telemedicine might be available
    • Sometimes I think the wisest course is to assume no one has heard anything from anyone else on the team, no matter how vital 

    Resources: 

    Board Certified Pharmacists as Team members
    https://www.youtube.com/watch?v=GCJyQtgruXQ&feature=youtu.be

    List of team members via @CancerCare
    http://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning

    National Society of Genetic Counselors
    http://www.nsgc.org/

    The must-have binder: my key to being an organized patient (or caregiver)
    http://lisabadams.com/2011/03/16/the-binder-what-every-patient-should-have/


    The next #gyncsm chat is Wednesday, December 14th at 9pmET. The topic is Getting Involved in Research.   

    Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.

    See you next month. 

    Dee 
    Co-founder #gyncsm                              


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    Friday, 4 November 2016

    November Chat - Your Health Care Team

    This month our chat will look at the role various professionals and others play in the care of those diagnosed with gynecologic cancer. The Your Health Care Team chat will begin at 9pm ET on Wednesday November 9, 2016.

    In preparation for this chat, have a look at this short video from SGO:

    On Your Side: The Gynecologic Cancer Care Team

    And here are the questions we will use to guide our discussion.

    T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?

    T2: Which professionals do you include in your health care team? What are some important roles to fill?

    T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 

    T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?

    T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 

    T6: How do you handle communication and coordination between the members of your health care team?

    We look forward to you joining us on Wednesday, November 9th.

    Dee
    Co-Moderator
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    Wednesday, 12 October 2016

    October 12,2016 Chat - Warrior? Fighter? The Words we use...

    Tonight's chat topic was Warrior?Fighter? The words we use... . We welcomed our regular #gyncsm physicians, patients, those who had been diagnosed with cancer and caregivers as well as those from other Twitter cancer and chronic disease communities. Forty-four participants in all  created over 2 million impressions during the hour chat. For more chat analytics please click here.

    Below you will find tonight's topic questions as well as sample answers. You may find a transcript here. Please scroll to the end of the post for Resources.

    T1a: What does the term "survivor" mean to you? Do you use it?

    • I usually say "cancer patients and caregivers." People out of treatment and/or in remission don't seem to mind being called pts
    • I like survivor if it means that you are survivor from the moment you're 1st diagnosed. A lot of surveys say survivor but mean NDP
    • Somedays I feel like a survivor, somedays a thriver, somedays a fighter, somedays just overwhelmed. So personal & so dependent.
    • I don't like the survivor label much. Avoid it when I can, but do use it sometimes due to lack of better word
    • My son's vocabulary quiz "To survive is to remain alive, even after great difficulties"
    • I think that the term survivor can be overwhelming for some patients - can make them feel like a failure if they recur
    • That's the term I always use. It has such a wide definition it seems to encompass all my patients.

    T1b: What terms other than "survivor" do you use - for yourself or others?

    • On good days... "bad ass" *grin* RT : T1b: What terms other than "survivor" do you use - for yourself or others?
    • Cancer Experienced - I could go for that
    • some use thriver
    • Survivor replaced the victim language. So it is MUCH better than that!
    • There is always "person". We are so much more than cancer "survivors"
    • I say I'm living with cancer. I want to educate people about chronic cancer. Also I'm a lover not a fighter by nature 


    T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

    •  I loathe the war metaphors.
    • As a marketer / former nonprofit person I purposely avoid war/battle. Though fundraisers will tell you those get the money.
    • Hearing it said someone lost her battle to cancer, is like fingernails on a chalkboard to me. Hate that.
    • The war analogies work for some - to "fire them up" - but for many it can feel like a failure if you frame it as a WIN/LOSE
    • War metaphors, we picture ourselves standing shoulder to shoulder. Survivor image is Robinson Crusoe or someone in a lifeboat.
    • it especially saddens me that the war language makes hospice or even palliative care "giving up"
      
    T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

    • going with Cancer Experience again
    • I think journey can be good because it gives the idea of a beginning and an end - not win or lose
    • I never use journey
    • It has been a journey for me – with bumps and detours and flat tires and a great appreciation for things - the amazing views
    • both cancer Journey and cancer Experience seem to honor individual differences
    • a trek? maybe it needs its own term - isn't there a special term for those who climb Mt. Everest?
    • I say my cancer journey, experience or mostly my life with cancer (I think that started the 3rd time I got sick).
    • There definitely needs to be a verbal space for those who are living with metastatic disease, with cancer as a chronic illness.
    • I love (& hate) this tension between need for individual words vs. research needing consistent labels 

    T4: What cancer terms or labels do you have a negative reaction to and why? 

    • Victim, sufferer, lost the battle - anything that makes the person in the situation sound downtrodden
    • The lost her/his battle to cancer. One of my top cancer language pet peeves. Insulting (IMO)
    • Battlefield analogies. Victim. Man I hate those
    • I try to avoid saying "your" cancer to a patient, instead say "the" cancer when talking about disease status
    • I cringe at Victim.
    • I am also a big hater of the words Prevent and Prevention. What we can do is reduce risk. Risk reduction
    • the lost/battle thing is more obvious when you think about calling someone a Loser
    • And don't get me started on the cancer is a gift thing


    T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?


    • Just deeper understanding in general. Many terms are very superficial or show misunderstanding.
    • when someone dies, just say it. Died from colon cancer. or whatever. Truth telling. Plain & simple
    • Could cancer groups be more proactive w/ media to start changing way we speak about cancer? AFSP very active w/ media & suicide
    • Take cue from person with cancer. Use words she/he seems to like. Ask if certain words make them uncomfortable
    • Media - be responsible when reporting celebrity cancer news - whether deaths, remission, risk-reduction. Take some time.
    • Cancer groups - Think twice about battle terms and be sure you aren't excluding those who may need you most
    • few journalists specialize in medical reporting- if interviews are not quoted, risk to misinterpret information
    • Understanding how someone finds strength from life-threatening challenges provides insight on empathethic language
    • I loathe the "silver bullet" language - cancer is so many different diseases. One success does not equal a cure for all 


    Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at
    https://www.smartpatients.com/gyncsm .


    We look forward to see you next month on Wednesday , November 9, 2016 as we chat about Your Health Care Team Members. 

    Dee Sparacio
    Co-founder #gyncsm


    RESOURCES


    Andrew McDonald: The war of words about cancer - BMJ  http://blogs.bmj.com/bmj/2016/08/10/andrew-mcdonald-the-war-of-words-about-cancer/

    Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog http://www.drbrianstork.com/blog/words-matter/
     
    Susan Gubar: Not a Cancer Survivor - NYT http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/

    Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog http://nancyspoint.com/nine-cancer-language-traps/
    Jen Sotham: The Language of Helping a Loved One With Cancer - Cure  http://www.curetoday.com/community/jen-sotham/2016/08/the-language-of-helping-a-loved-one-with-cancer?p=1
    Dee Sparacio: The Words I Use - WomenofTeal blog http://womenofteal.blogspot.com/2014/11/the-words-we-use.html

    Blog | Why I Don't Like the Phrase Cancer Survivor http://www.cfah.org/blog/2013/why-i-dont-like-the-phrase-cancer-survivor

    Blog | I did not fight cancer http://www.blogher.com/i-did-not-fight-cancer







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    Supplements / Vitamins Are they helpful? May 8, 2019 Chat

    We were pleased to have Stacy Kennedy MPH,RD (@stacykennedyrd) join us for this informative chat on vitamins and supplements.  You may find ...