Friday, August 12, 2016

#Dazzle4Rare Campaign

The #gyncsm community supports women diagnosed with a number of gynecologic cancers that are considered by the NIH to be rare diseases. In an effort to raise awareness that Ovarian, Endometrial/Uterine, Fallopian Tube, Gestational Trophoblastic Disease, Vaginal and Vulvar Cancers are rare diseases, #gyncsm supports the #Dazzle4Rare campaign. You can join the effort too. Read the post below which originally appeared on the HESA website (http://www.hesaonline.org) and join us as we support #Dazzle4Rare during the week of August 15th - 21st. 

Here's something from #gyncsm that you can share:
  • Let's #Dazzle4Rare - Learn about some of the rare gynecologic cancers http://gyncsm.blogspot.com/2016/02/february-chat-rare-gyn-cancers-vuvlar.html #gyncsm
Click here to join the #Dazzle4Rare thunderclap.

#Dazzle4Rare Social Media Campaign

During the week of August 15th through the 21st HESA is going to #Dazzle4Rare. We will be tweeting, posting, liking, and sharing for rare disease. It’s projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With 10% of the population suffering from between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.

We can band together as a wider, greater community and spread awareness together and for each other. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.

Tag your selfies. Tell your rare disease story. Share someone else’s rare disease story. Raise awareness.

If you would like to join our #Dazzle4Rare campaign, join our discussion group. We’d love to hear your ideas, see your posts, and find out more about your organization! Let’s dazzle the World and show everyone how rare can shine!


---------------------------------------
Dee and Christina
Founders, #gyncsm Community

Wednesday, August 10, 2016

August 10,2016 Chat - Shared Decision Making / Patient-Centered Care

Twenty five participants joined our moderators to discuss shared decision making and patient-centered care. We were pleased to have Kara Rayburn, Patient Empowerment Network (@power4patients) join us. You may find additional analytics here and the chat transcript here.

The questions used during the chat and some responses appear below.

T1: What would patient-centered care (PCC) look like for you? (for appointments, lab results, treatment, surgery, medical records, etc.)

  • Patient-centered care would consider treatment options based on patients' unique concerns, preferences, and values
  • Everything under one roof, team approach, easy-to-understand unified billing, easy referral to out-of-network specialists, Personhood, mutual respect, and caring go along with those services implicitly or it isn't PCC.
  •  Patent centered care means setting up medical evaluation and treatment options with a focus on where the pt is coming from
  • how about meeting me where I'm at---Text, email, phone appts.
  • or my family & myself patient centered care meant including the entire family in convos & treatment planning
  • In my dream world, PCC includes awareness that meeting mental health & social needs is a crucial element


T2: What is Shared Decision Making (SDM) in healthcare all about? Where can people learn more? What are tips for making it work?

  • It allows pts & their HC team to make decisions together-taking into acct both the best med evidence available & pts values/prefs
  • Shared medical decision making is a collaborative experience between patients and providers
  • As we move closer toward "consumers" of healthcare, #SDM allows for the patient perspective to become increasingly important 
  • DeMeester said “(SDM) occurs when patients/clinicians work together to reach care decisions that are both medically sound and responsive to patients’ preferences and values”
  • shared decision making requires informed choices...don't be afraid to ask questions and resources to learn more!
  • It sounds to me like SDM brings the values of person-centered care (Carl Rogers) to all medical settings beyond mental health.


T3: What value does a patient-centered care (PCC) / shared decision making (SDM) approach bring to patients, families and providers?

  • #PCC & #SDM allow for patients and their families to be active participants in doctor consultations
  • As a provider, I can have "tunnel vision", PCC and SDM help keep me grounded and focused on what is best for the patient
  • There is a lot to be said for knowledge, peace of mind, & comfort of care
  • "Good Outcomes" are defined by what's meaningful and valuable to the patients and their families
  • I think you can tell there has been PCC/SDM if all parties feel more satisfied and informed after an encounter
  • PCC & SDM are integral to the @GeneticCouns process: info can impact a patient & their entire family, no 1 right choice for all
  • #PCC creates value by changing infrastructure to include EHR & access to scheduling, thus strengthening the pt-doc relationship


T4: How can patient-centered care (PCC) and shared decision making (SDF) improve care at end-of-life?

  • PCC/SDM throughout the process means the end of life and discussing it don't come as a huge unexpected shock. 
  • #PCC and #SDM promise to improve the experience and quality of health care, while also reduce waste, over-treatment, and costs
  • #SDM takes relationship building so having that in place can only help in #EOL. It's uncomfortable territory for all involved.
  • shared medical decision making is the perfect way to address end of life care - help empower patients and ensure dignity
  • if the patient & their needs and wants is at the center of all discussions - May make end of life discussions easier
  • Seeing a theme: PCC & SDM are processes...they continue and evolve throughout patient & provider relationship, needs change ovr time


T5: Have you seen PCC and/or SDM put into practice? What has worked well? How have you benefited?

  • We all decided on best care for our loved one while being informed by Drs & social workers. Made horrible -tolerable
  • PCC & SDM work best when we take time to really listen. Easy to forget in the course of a busy clinic or stressful situation
  • The struggle is spending enough time to truly incorporate shared medical decision making in the context of an overbooked clinic
  • I think systems where you can get lab results online - if you want them that way - are PCC


T6: What are some of the barriers to PCC and SDM? How open to these concepts are the medical community? 

  • Time. Doctors are pressured to see many pts per day making it hard to build relationships and cover all pt concerns and issues 
  • one factor among providers that can reduce PCC can be burn out ...more and more professional societies are starting to address
  • Find the patient's perspective - the values of one patient don't match another's 
  • Patients need to realize seeing other staff is not disregard for their needs, it is to make sure their needs are met
  • Patient : ability to understand options, research them, learn it is ok to ask questions.

Resources shared during the chat may be found below.

Thank you Kara Rayburn for your insight and to our Health Care moderators and supporters for joining us. Remember you can always continue this conversation on Smart Patients at https://www.smartpatients.com/gyncsm.

September is Gynecologic Cancer Awareness Month and #gyncsm's Third Anniversary. Our chat topic is Gynecologic Cancer Advocacy. In addition, we will discuss the future goals of the  #gyncsm community and launch a ten question survey to help us better understand and serve our  participants. We hope to "see" you on September 14, 2016


Dee
#gyncsm co-founder

RESOURCES:

Patient Centered Care begins with Respect
https://modelingchange.blogspot.ca/2016/08/patient-centred-care-it-begins-with.html

A Person Centered Approach to the Care of a Chronic Illness
https://t.co/iyHjzfwsXX

The Role of Dignity in Health Care via @s4pm
https://t.co/M7LtmfAVky

Patient Centricity and Improving Clinical trials
https://t.co/OE5JStu0rj

@itsthebunk #MedX talk on Dignity in healthcare
https://t.co/wrVKhBpmws

@MayoClinic Shared Decision Making National Resource Center
https://t.co/wPA3YyPUwa

Robert Wood Johnson Foundation @RWJF Patient-Centered Care Collection
https://t.co/lBDils57nl

Tools for shared medical decision making by AHRQ
https://t.co/QCa7JFQy3Z

#EmpoweredPatient toolkit
https://t.co/b4ZDhbbaUK

Palliative care review of PCC
https://t.co/MguGfZWKo9

Accelerating Delivery of PC, High-Quality Cancer Care
https://t.co/o2IDKHFAep

Finding the Right Care for You
https://t.co/yWRihPYk9x

How to Communicate with Your Medical Team
https://t.co/FTBuEOy3bg

How to Tackle Physician Burnout
http://falconhca.com/how-to-tackle-physician-burnout/

Some good accounts to follow/check their website on #SDM @S4PM @IMDFoundation @PCORI

Suggestions from Smart Patients:
Society for Participatory Medicine
http://participatorymedicine.org/

Lown Institute
http://lowninstitute.org/home/vision-mission-history/

Friday, August 5, 2016

Shared Decision Making / Patient-Centered Care- August #gyncsm chat

Have you sat with your doctor to discuss what are the next steps in your treatment plan? Has your health care team asked you, "What are your goals? ". Have they given you a choice regarding follow-up tests? Have they suggested clinical trials or complimentary therapies? Have you been asked about your experience after a treatment? Physicians - Do you explain treatment outcomes in lay terms with your patients when helping them decide on a treatment? Do you refer your patients to a support group or therapist so their emotional needs are met? Nurses - Do you relay information a patient has shared with you so that accommodations can be made? These are the types of discussions that lay the groundwork for patient-centered care and shared decision making.

Maybe you've been involved in such discussions and didn't even know the terms for it or that there are people advocating for these ideas in healthcare. Maybe this is just the sort of care you have been looking for. Either way, we hope you will join us on August 10 at 9pm ET as we discuss Shared Decision Making and Patient-Centered Care. Our guest for this important chat is Kara Rayburn from the Patient Empowerment Network. She will be tweeting as @power4patients.



These questions will help guide our chat. 

T1: What would patient-centered care (PCC) look like for you? (for appointments, lab results, treatment, surgery, medical records, etc.)

T2: What is Shared Decision Making (SDM) in healthcare all about? Where can people learn more? What are tips for making it work?

T3: What value does a patient-centered care (PCC) / shared decision making (SDM) approach bring to patients, families and providers?

T4: How can patient-centered care (PCC) and shared decision making (SDF) improve care at end-of-life?

T5: Have you seen PCC and/or SDM put into practice? What has worked well? How have you benefited?

T6: What are some of the barriers to PCC and SDM? How open to these concepts are the medical community? 


If you want to do some reading prior our chat, we recommend Marie Ennis-O'Connor's recent article 
A Person Centered Approach To The Care of Chronic Illness on the Patient Empowerment Network website. 

We look forward to seeing you later this month. 

Dee
#gyncsm co-founder

Wednesday, July 13, 2016

July 13, 2016 Spirituality & Quality of Life Chat

We were pleased to welcome Meredith Gould (@MeredithGould), writer, sociologist, digital strategist and co-founder and co-moderator of the #hlthsp (Health and Spirituality) chat as our guest for this month's chat on Spirituality & Quality of Life. Our chat had over 1.9 million impressions and 36 participants. You can find the complete analytics here.

Below you will find the questions we used to guide our discussion along with a sample of some of the responses. You can read the complete transcript here. At the end of this post you will find resources shared during the chat as well as other information gathered for the chat.

T1: To frame our discussion: What does spirituality mean to you? How might it differ from religion?
  • Spirituality for me is an understanding that we're part of something bigger than ourselves & connected in ways we can't "see"
  • #spirituality for me is a sense of inner purpose AND feeling connected to the 'universe' at the same time. :)
  • Spirituality is the connection to something greater, religion may help us achieve this
  • @ASCO -“Spirituality is aspect of humanity that refers to way individuals seek & express meaning & purpose &the way they experience connectedness to the moment,to self,to others,to nature, &to the significant or sacred” 
  • Spirituality gets defined in multiple ways but typically refers to realization/awareness of something greater than self. 
T2: How do you personally define "quality of life"? What role does spiritual life or practices play for you?
  • QOL covers a number of different aspects of life - symptom burden, pain, able to perform activities, able to enjoy life!
  • QOL for me = doing/participating in things which bring value to my existence. Gardening, playing w grandkids, just being still
  • QoL for me: Being able to manage gracefully despite health impediments.
  • The greater my spiritual awareness, the better my QoL under all (crappy) conditions.
  • such a great point - our spirituality can help our coping mechanism and ultimately, our quality of life
  • Quality of life is how I feel, what I'm able to do and contribute, being able to be myself, and be a part of the world
T3: What connections have you experienced btwn spirituality and your overall quality of life? Your mental health? Physical health?
  • And so to reverse engineer it: if I'm feeling off mentally/emotionally, I check my spiritual condition
  • When I am in touch w spiritual practices, I am more focused, centered and feel healthier. I can deal with a lot of BS
  • Spirituality, QoL, health all intertwined. Doing my best, then accepting where I fall short.
  • Seems like spirituality gets left out of the healthcare convo but for many patients it is a big part of their life
  • I zoom in on these spiritual practices of being: willingness, curiosity, empathy, generosity, delight 
T4a: What impact has receiving/living with a critical diagnosis had on your spirituality? How about your spiritual practices?
T4b: What impact has your spirituality and spiritual practices had on your experience with a critical diagnosis and treatment?
  • The impact of truly appreciating its inevitable presence and importance in my life. Yes, made me believe in miracles too
  • Relative to chronic illness/pain, I find curiosity is a fabulously helpful useful spiritual practice.
  • I would say my spirituality got stronger in light of my dx. My wonder at ordinary things - flowers, rain, mountains, oceans
  • That's when I started my love for seeing the sun rise and set
  • Well, having spiritual awareness and knowing how to enhance spirituality certainly helps when poop hits the fan o' life.

T5: How/who/what supports your spiritual awareness? What are some helpful digital/social media resources for spiritual support?
  • Lots of valuable groups (some private) on FB that provide communities of spiritual support.
  • Seriously, the best thing was having my first grandchild 3 years ago. Seeing the wonder of life through her eyes.
  • I had a good meditations workshop you could make fit with your own spirituality. Art and music are great spiritual practice
  • Our #hlthsp group isn't super chatty (on purpose) but a nice place to find resources: https://t.co/iQrSs21q0O
  • There are lots of good articles and resources on Mindfulness. Good place to start. 
  • Those free Oprah meditations or the app Calm can be a good starting place

The next #hlthsp chat is Wednesday, July 20th and will be a continuation of the Spirituality and Quality of Life discussion started here. We hope you will join us.

Can't wait until the 20th or want to comment on tonight's discussion? We are on Smart Patients at https://www.smartpatients.com/gyncsm.

The next #gyncsm chat will be on Wednesday, August 10th at 9pm ET when we will discuss Shared Decision Making / Patient-Centered Care with the Patient Empowerment Network  (@power4patientswww.powerfulpatients.org) See you then.

Dee
Co-moderator #gyncsm chat


RESOURCES

Desperately Seeking Spirituality by Meredith Gould
The Light Within by Lois Ramondetta, MD and Deborah Sills

Other resources not mentioned during the chat:
ASCO 2016
Spirituality, symptom distress and quality of life of Latin American patients with advanced cancer (LAAdCa): A multicenter study.
http://meetinglibrary.asco.org/content/161925-176

Survey of spiritual quality of life among survivorship and distress guidelines.
http://meetinglibrary.asco.org/content/163893-176

Just what are spiritual needs of cancer patients? An empirical study in a diverse population.
http://meetinglibrary.asco.org/content/164936-176

Spirituality and Palliative Care
http://ecommons.luc.edu/cgi/viewcontent.cgi?article=1023&context=socialwork_facpubs

ASCO Palliative Care meeting 2015Effect of a spiritual care training program on patient quality of life and spiritual well-being.
http://meetinglibrary.asco.org/content/155366-165

Cancer Today Magazine A New Look at Spirituality http://www.cancertodaymag.org/Summer2014/Pages/Defining-Spirituality-Cancer-Patients.aspx

How religious and spiritual beliefs relate to cancer patients:physical, mental and social well-being
http://ecancer.org/news/7609-how-religious-and-spiritual-beliefs-relate-to-cancer-patients----physical--mental--and-social-well-being.php

Friday, July 8, 2016

Spirituality and Quality of Life - July 13th #gyncsm Chat



This month the #gyncsm community will be discussing Spirituality and Quality of Life. Joining us will be Meredith Gould, PhD (@MeredithGould), who co-founded and co-moderates the monthly #hlthsp (Health and Spirituality) chat. Meredith is a writer, sociologist and digital strategist with decades of communications experience in healthcare and faith-based organizations. Her most recent book is titled "Desperately Seeking Spirituality".

The topic questions we'll cover are:

T1: To frame our discussion: What does spirituality mean to you? How might it differ from religion?

T2: How do you personally define "quality of life"? What role does spiritual life or practices play for you?

T3: What connections have you experienced btwn spirituality and your overall quality of life? Your mental health? Physical health?

T4a: What impact has receiving/living with a critical diagnosis had on your spirituality? How about your spiritual practices?
T4b: What impact has your spirituality and spiritual practices had on your experience with a critical diagnosis and treatment?

T5: How/who/what supports your spiritual awareness? What are some helpful digital/social media resources for spiritual support?


In a recent ASCO (Amercian Society of Clinical Oncology) Post article entitled "Integrating Spirituality Into Palliative Care Services: A conversation with Dr Christina Pulchalski MD", Dr Puchalski speaks of a 2009 paper produced after a Consensus Conference which identified points of agreement about spirituality as it applies to health care and made recommendations to advance the delivery of quality spiritual care. That paper makes for an interesting "deep dive" read into this topic.

There was also an abstract on this topic released in conjunction with the 2016 ASCO Meeting: Survey of spiritual quality of life among survivorship and distress guidelines. Its conclusion, "Spiritual quality of life is addressed by current practice guidelines of psychosocial distress, but survivorship guidelines provide little direction for screening or management." Fascinating that spirituality only enters the discussion here in terms of "distress".

We hope you will join us Wednesday, July 13 at 9pmET as we discuss this important aspect of support and care of cancer patients and anyone who has faced a critical diagnosis.

If you'd like to check out #hlthsp, you can follow @hlthsp on Twitter and their chats are held on 3rd Wednesdays at 9pmET. The next #hlthsp chat is 7/20 and the topic will be a continuation of the Spirituality and Quality of Life discussion started this month on #gyncsm.

Dee & Christina
Co-founders #gyncsm Chat

Sunday, June 26, 2016

Celebrating Cancer Hashtag Communities and a Moonshot

The #gyncsm community is pleased to be joining in the activities celebrating our cancer hashtag communities and the Moonshot Program. Many representatives of our hashtag communities have been invited to the Moonshot Summit in Washington, DC or one of the Regional Satellite Summits. We invite everyone in the gynecologic cancer community to join with survivors, advocates, researchers and others for one of the chats listed or to submit an idea to the Moonshot Program (link provided below). 

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.
  1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
  2. The 5th Anniversary of the beginning of Breast Cancer Social Media (#BCSM) and the beginning of cancer hashtag communities on the web happens July 4!
Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27: #BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
--Expanding Clinical Trials
--Enhanced Data Sharing
--Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29: Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29: #Hcchat will conduct the official Moonshot chat on Twitter (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic "Will the Moonshot lead to the death of cancer?" This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon's Cancer Act and author of "The Death of Cancer."




Thu 6/30: #LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
--Cancer Immunology and Prevention
--Tumor Evolution and Progression
--Implementation Sciences
--Pediatric Cancer Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30: Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03: #BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04: 5th anniversary of #BCSM and cancer hashtag communities

Mon 7/04: #BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you"ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/



  AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC Cancer Moonshot Summit Agenda 1 (CROPPED)
Cancer Moonshot Summit Agenda 2 (CROPPED)

















Original blog post appeared on lcsmchat.org site. 


Dee and Christina
Co-founder's #gyncsm Chat (est. 2013)

Wednesday, June 8, 2016

June 8, 2016: What's New in Gyn Cancer Research

Thirty-four #gyncsm community members chatted about What's New in Gyn Cancer Research.  Our discussion focused on research presented at the Society of Gynecologic Oncology Annual Meeting (#SGOmtg) held March 19-22 in San Diego, the American Association for Cancer Research Annual Meeting (#AACR16) held April 16-20 in New Orleans, and the American Society of Clinical Oncology Annual Meeting (#ASCO16) held June 3-7 in Chicago.

You may find the transcript here and the chat analytics here

We began our chat by remembering our friend and supporter of #gyncsm, Jody Schoger, #bcsm co-founder. She was an amazing advocate. 

Topic Questions / Sample Response Tweets: 

T1:Do you research new treatments and studies online? Do you follow scientific meetings like #SGOmtg, #AACR16 and #ASCO16? 

  • I participate in twitter to inform patients and families of key findings from meetings using #SGOMtg #ASCO16 #AACR16
  • A caution in keeping up with research is how long it can take for studies to lead to any change in practice guidelines
  • Plus I want to be prepared with what options I will have if I recur again
  • I find @ASCOPost emails useful.

T2:GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 
  • #ASCO16 session on GOG252 Walker: Median PFS all three arms GOG252 similar
  • There is still a benefit for IP chemo - demonstrated in 3 large randomized trials We need to understand who benefits most
  • Yes, Dr Gourley mentioned 3 Pos studies(GOG 104,114,172), 1 neg(252)
  • I feel more confident telling patients that if they want the benefits of GOG172, we have to at least try the same regimen 
  • #ASCO16 session on GOG252 Mackay-“unresolved issues” 
T3:In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 
  • https://t.co/DfjMW5ZPwP adv endometrial cancer : everolimus, letrozole,metformin showed clinical benefit in ph 2study 
  • I'm very excited about the interest & research on hereditary cancers and how to use this to guide targeted therapy-new options! 
  • Pembrolizumab:well tolerated, showed antitumor activity pts w/ PD-L1+ adv cervical squamous cell cancer.https://t.co/P5KsDdtTUA
  • Precision medicine for Gyn disease is finally taking root. It not only bevucizumab anymore
  • Kurian: Genes mutations in #ovca article https://t.co/O1mgn5zqoc
  •  Liquid biopsies (look for circulating tumor DNA in blood) https://t.co/PUROem0e7N 4 screening and during treatment talked about 
  • There was a clear theme of trying to find out who are the responders to a given Rx - understanding the pts that benefit the most
T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 
  • The data on early involvement of palliative care should be able to be extrapolated to gyn cancer patients and caregivers
  • QOL may predict survival in recurrent #ovca @ASCOpost -https://t.co/te0NvFAkPJ 
  • Real studies on improving chemo induced. Neuropathy with PT
  • Qol: older long term #ovca survivors better QOL than younger https://t.co/OGKtr3t0oi
  • It was great to see presentations beyond standard chemo treatment. ASCO. It's not just about chemo
T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?
  • Been great to see White House precision medicine efforts. workshop this week: Engaging participants as partners in research
  • Let's start with adding quality of life components to all studies.
  • Being more patient-centered means looking beyond overall survival endpoints. Also need patients in design of studies to reach.
  • This from #SGOmtg patient-centered research: Accepting treatment w/ Side Effects change as Goals Change https://t.co/xhY9Wg1FRn
  • Patients see so much in the practical side of clinical trials that trial designers don't think about.
  • I would love to see advocates on irb. And involved in trial design

Our next #gyncsm chat is on  Wednesday  July13th  at 9pmET when we will discuss Spirituality and Quality of Life with guest @MeredithGould of #hlthsp. We hope you can join us. 

Remember patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw

See you next month!

Dee Sparacio
Co-founder #gyncsm Community and Chat

Resources:
@SGO_org Society of Gynecologic Oncology: #SGOmtg Abstracts and Late-breaking Abstracts https://t.co/vjzYlqOTC1

@AACR American Association for Cancer Research: #AACR16 Abstracts https://t.co/2sZ6G7QveL

@ASCO American Society of Clinical Oncology: #ASCO16 abstracts https://t.co/3vruaogIUV

"Roundup of #OvarianCancer Abstracts From #SGOmtg on Women’s Cancer" https://t.co/7z5UlcDx17 via @ascopost

@ocrfa statement on GOG 252 https://t.co/XTjyzfOpw9

key abstracts at #ASCO16 Gyn Onc at ASCO 2016: Ovarian Cancer https://t.co/t1krzp6ymx via @YouTube

Abstracts #ASCO16 Gyn Onc at ASCO 2016: Cervical Cancer https://t.co/780LCAOh72 via @YouTube

abstract review from #ASCO16 - Gyn Onc at ASCO 2016: Endometrial Cancer https://t.co/Dsh7AdyArv via @YouTube

exercise and neuropathy: https://t.co/LZwUSbWVAi

Engaging participants as partners in research - Workshop Storify https://t.co/RrRVpndnQd via @stanfordmedx

researchers going directly to metastatic breast cancer patients. https://t.co/iV2dnxfzIY?