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  (@power4patients, www.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

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

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 5^th 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 7/04:5^th 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


















Original blog post appeared on lcsmchat.org site. 


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

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?

What's New in Gyn Cancer Research - June 8th #gyncsm Chat

Join us on June 8, 2016 at 9pm ET (8pm CT/6pm PT) as the #gyncsm community discusses What's New in Gyn Cancer Research. 

Our chat will focus 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.

We hope you will join us as we answer these questions:

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

T2: GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 

T3: In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 

T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 

T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?

You can search abstracts and sessions from each meeting on these corresponding pages:

#SGOmtg Abstracts & Late-breaking Abstracts
 https://www.sgo.org/2016-annual-meeting-archives/

#AACR16 Abstracts
 http://www.abstractsonline.com/plan/start.aspx

#ASCO16 Abstracts
 http://abstracts.asco.org/176/CatView_176_B.html


Do you have a research topic you are interested in learning more about? Let us know by commenting below.

See you on the 8th.

Dee
Co-founder #gyncsm

May 11, 2016 Getting Social with your Health #gyncsm Chat

We were delighted to welcome John Novack (@teaminspire) from Inspire (www.inspire.com) to this month's Getting Social with your Health chat. John is a former longtime healthcare reporter/editor and served as a board member and officer of the Association of Health Care Journalists. Inspire serves as an online patient support community for over 100 patient advocacy organizations and their members, including the Ovarian Cancer National Alliance and the National Cervical Cancer Coalition. Inspire creates and manages health condition specific support groups for over 750,000 patients and caregivers.

We had 37 participants during the night's chat and over 2.9 million impressions.  You may find analytics here.

You can get a taste of our discussion below. For all responses, please read the full transcript here.

T1: What social media (SM) outlets do you turn to for info about GYN cancers / your health? What's been helpful?

• I like Twitter and LinkedIn for sharing on info on GYN cancers and survivorship in general.
• IMO Twitter is the best SM outlet for info. Advocates, medical profs use Twitter more, great way to connect to experts.     
• Our sense is that people find multiple resources news or community, & hone in eventually on what works for their needs.
• only shortcoming with #some is there is bad info mixed with good and pts often don't know how to tell the difference                         

T2: Do you share your own health journey on social media (SM)? Why or why not? If yes, how did you decide which outlets?

• I often use our family's cancer journey or my learnings for patients journeys in published writings. too long for social media
• Writing is my catharsis, & sharing stories helps others in similar situs know they're not alone.
• Yes, on all SM platforms. Talk a lot about being a #Previvor, #Lynchsyndrome #Oophorectomy, and #HereditaryCancer. Write a lot.
• I share my journey on SM to advocate. I was more private when early stage due to career concerns.  
• YES - Started w/ ACOR , then on my blog , Twitter, Facebook groups, @inspire, @smart_patients

T3a: Why do you join online patient groups? Join multiple? What info were you 1st seeking? (treatment, trials, side-effects, etc)

• I join online patient groups (like #gyncsm) to support the spread of solid healthcare information and to keep current on patient needs.
• I started with cancer chat on AOL to help my husband, then got into the deep stuff with ACOR and continued it on Smart Patients.
• many seek to know aren't alone, hear from long-term survivors, find hope - also the practical, day-to-day tips
• Initially for support, got frustrated -- don't find them helpful or supportive
• One thing it's good for is debunking the miracle cures because people have developed trust in their groupmates

T3b: What topics do you value most? (mental health, sexuality, support, etc.) Why are people taking these online vs. other options?​

• In our @OCNA group, top topics treatment, recurrence, and side effects.
• In our @StopHPVCancer group, the top topics are cervical precancer, treatment, & early detection.
• Emotional support component is key. When #OvarianCancer group refers to "teal sisters," the deep connections are clear.
• there is only so much that can be covered in the oncologist/doctors office. so much to learn beyond and ppl help you process 
• Terms & acronyms of particular cancers intimidate many newly diagnosed. Good online groups allow for “dumb questions.”
• Online support communities: Cuz between doc appointments, we have a lot of living to do

T4: What advice would you share about seeking health info and support on social media/patient communities? What are some cautions?

• There are so many great resources online. But you need to be a critical consumer. Check for moderation, sales agenda, etc.
• My advice:Listen, but don't make behavioral changes based on Internet advice. Check with Doctor first.
• be wary of "miracle" cures & treatments. Even well-meaning folks can promulgate dicey stuff in the name of giving hope
• Same evaluation required as for any website: trustworthy source/sponsor, credible, timely, relevant.
• For us, strong online communities have self-regulation, but with an openness in tone and in content. Can be tough balance. 
•  read the “about” page and if there isn’t an “about” page, or easy way to make contact, could be a problem.
• I seem to hear the most issues w/ facebook groups. A platform that meets ppl where they are but not always strong moderation 

T5a: How have you benefited from getting social w/ your health - publicly and/or in patient groups? Does it impact your decisions?

• I'm on a journey to becoming a more engaged, empowered patient and getting social w/ my health has helped me and inspired me.
• Finding a group of folks who understand at a personal level how to navigate the cancer journey. The actual day to day stuff 
• My decision to get social has made me a better clinician. I can really hear what people need and adjust my care.
•  Advocacy via SM gives me a sense of purpose. 
• Meeting other amazing advocates, learning about treatments etc from “twiends” who are gyn oncs and researchers
• Yes, practical concerns like how to deal with side effects - patients and caregivers share good tips.

T5b: How have you benefited by participation in the #gyncsm community? How can we increase participation by those diagnosed w/ gyn cancers? 

• The biggest benefits are in the community itself. Learning from each other.
• make sure patients know "what's in it for them" when using your services. You have good stuff! #Flaunt it :)
• I learn about great advocacy tools and current research--such a gift.
• Twitter communities like #gyncsm bring together so many varied perspectives into one conversation. Invaluable to me.
• Providing an atmosphere where our new gyn cancer members feel heard--not judged--is crucial.

Please see our resource section below for articles on the use of social media by patients and physicians.

Do you want to join in the conversation or continue to discuss this topic? Join us on Smart Patients at https://www.smartpatients.com/gyncsm

Thank you, John Novack, for joining us and sharing your insights on social media and your online support communities.

We hope you all will join us on Wednesday June 8, 2016 at 9pm ET as we chat about What's New in GYN Cancer Research. 


Dee
Co-moderator #gyncsm chat

Resources:

Social Media in Oncology: Does It Help Patients? http://www.medscape.com/viewarticle/862558

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

http://www.jmir.org/2015/7/e188/

Disease Specific Hashtags for Communication about Healthcare

http://www.slideshare.net/subatomicdoc/disease-specific-hashtags-for-communication-about-cancer-care-48866106

Twitter Responds: Reactions to Patients Tweeting about Their Cancer - https://connection.asco.org/commentary/twitter-responds-reactions-patients-tweeting-about-their-cancer

Virtual Patient Communities Engendering A New Social Health Era

https://www.powerfulpatients.org/2015/11/03/virtual-patient-communities/

How do we know that social media is important to health care? 

http://e-patients.net/archives/2013/10/how-do-we-know-that-social-media-is-important-to-health-care.html

e-Patients in Twitter Hashtag Communities 

http://www.jopm.org/perspective/narratives/2013/05/29/e-patients-in-twitter-hashtag-communities

Practical Guidance: The Use of Social Media In Oncology Practice

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3439237/

Understanding Users Motivation to Share Health Information on Facebook -Thesis

https://open.library.ubc.ca/cIRcle/collections/ubctheses/24/items/1.0228654

A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636326/