September 14, 2022 Clinical Trials: When, How and For Whom

There is always so much to discuss about Clinical Trials and this month we concentrated on who should consider a trial, how to finding trials, eligibility, consent as well as what important questions you  should ask. You may find our transcript here and analytics here. 

Below are sample responses and resources shared during our chat. 

T1: What are some basic facts and key points about clinical trials that people should be aware of?

• Infographic covering about the phases and types of trials. There are lots of great resources out there even if you are just starting out. https://www.nih.gov/sites/default/files/about-nih/public-trust/clinical-trials-infographic.pdf
• Women of color are underrepresented in clinical trials . https://www.medstarhealth.org/blog/gynoc-equity
• A lot of trials in the cancer space are testing new treatment vs. current treatment. So participating does not put you at risk for no treatment or less treatment. In fact, you often are super well monitored whether standard or cutting edge
• #clinicaltrials have 3 phases Phase 1 – small group of patients test for safety and side effect; Phase 2 how well does treatment work Phase 3 large group of patients confirm how well treatment works, side effects, compare to other treatments
• Trials are voluntary and also you *always* have the right to say no and leave a trial
• Resources on Clinical Trials #gyncsm @GYNcancer Clinical trial basics https://www.foundationforwomenscancer.org/clinical-trials/clinical-trials-basics/ @GYNcancer Understanding Gyn Clinical trials https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be @SGO_org Gyn trials what it means for you video https://www.youtube.com/watch?v=ZdOyBbAvc_c

T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial?

• Trials are NOT just a last resort. Trials can be for any part of your cancer experience - even risk reduction pre diagnosis, for nutrition, long-term survival, etc. Any time is a good time to participate! 
• While patients shouldn't always have to start the conversation, they probably should. There are resources to help patients broach the conversation with their doctors.
• There are many different types of clinical trials and can be targeted to different populations and needs. It is important to ask your doctor what clinical trials are ongoing so that you can decide if any are right for you.
• It's great to learn about what clinical trial options are available at any phase of life/treatment. I used to think trials were just when there's no standard of care. I didn't realize we can research them on our own as well as through providers/hospitals
• It also depends where you are at. Sometimes it feels strange being heavily recruited into a trial with a new cancer diagnosis. Other times it feels hard to find a trial one qualifies for even when willing. Varies depending where patient is at.

T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time?

• Patients need access to their records... which isn't always the easiest. Patients should decide if they are willing/able to travel for a trial. Patients should think about their own goals/motives in participating to guide decisions and be clear with healthcare team
• Patients should know their type / subtype, stage, if they have been tested any genetic mutations. Consider how far you are willing to travel
• t's good to know where the trial is located, how time & appt. intensive it is, how risky of course, & if expenses/costs will be covered. Also, it's VERY important to know if it's blinded or unblinded, & the phase & what those things mean
• Clinical Trial Jargon Busting Guide from @power4patients: https://powerfulpatients.org/2019/12/02/understanding-clinical-trials-a-jargon-buster-guide/
• It's a good idea to know why you'e considering a clinical trial before trying to pick one. @nih has a great website resource. https://beta.clinicaltrials.gov/
• This @theNCI site offers questions you should ask re-safety etc https://www.cancer.gov/about-cancer/treatment/clinical-trials/patient-safety?cid=eb_govdel
• A great resource is https://clinicaltrials.gov/ which provides a starting point of available trials. You can take this information to your doctor & have a more in depth discussion of what eligibility criteria and requirements are needed for a particular trial. 

T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers?

• For ovarian cancer, @ClearityFnd has some great #ClinicalTrial resources https://forms.clearityfoundation.org/find-clinical-trials/ as well as a Treatment Decision Support program
•  this @theNCI site talks about how to search for trials . There is a chat feature on the site too! https://www.cancer.gov/about-cancer/treatment/clinical-trials/search?cid=eb_govdel
• Go to https://beta.clinicaltrials.gov/ There's just so much info, and you can input the type of trial you want.
• @OCRAhope has a search engine for finding trials https://app.emergingmed.com/ocra/home/

T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.?

• @CancerDotNet is a great starting point for many cancer-related topics. Here's their resources page for learning about Clinical Trials and how you might get involved https://www.cancer.net/research-and-advocacy/clinical-trials
• This depends on the specific trial. All trials have different requirements and not meeting the requirements for one does not mean not meeting the requirements for all
• to understand what you need to know about eligibility check out this from @americancancer https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/what-does-a-clinical-trial-involve.html
• Trials do have "rules" about who can participate. which are in place to make sure the research can answer the questions it is trying to. In recent years, more attn is being paid to making sure these rules are needed for each trial and are not serving as barriers.
• Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language
• It can be overwhelming searching for a trial. It helps to have navigators to narrow down possible matches if at all possible. Patients also need to know we can look into trials outside our hospitals. I didn't always know that

T6: What questions are important to ask when contacting the study team? What factors should be considered? 

• Your doctor may act as a liaison, but you can reach out to the study team directly w/ questions or concerns or just to get more information. Some study teams are better at marketing and communication than others... so patience is another tool when it comes to trials.
• So many ? * # days you will be on site for testing or treatment( if a treatment trial) * types and # scans , blood tests * compensation for travel * how and who to report side effects if you have them? * how long is the trial?

T7: For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience?

• In maintenance phase, I was in blinded study. It was over 2 years ago & I still don't know if I got a Parp (or not) or Immuno (or not) which would have bene helpful during recurrences. That's been a challenge for me (& medical team)
• t can feel important to be in a trial, to maybe advance science even if one can't benefit personally. And, there are real risks with doses, drugs, & also that even in trials errors happen (medical, scheduling wise, etc. & it can be consequential).
• I was in a ph 1 treatment trial on initial dx. I appreciated having a study nurse I could call with any ?'s I had. Drawback: Long treatment days - 12 hours
• Anyone in the U.S. can participate in the NIH @AllofUsResearch project: https://allofus.nih.gov/

If you have not participated in a clinical trial, what are some reasons you did not?

• I didn’t do a trial or think to ask. Knew I had cancer, found during hysterectomy, but thought to be early. Final path showed 3a. Chemo started one week after my surgery follow up. It was a blur
• There are definitely risks and benefits to be weighed when deciding about a clinical trial. Know your own goals. Make up your own mind. It is okay whatever you decide with the info you have.

We not only chatted about Clinical Trials, we also celebrated our 9th Anniversary as a chat and community on Twitter . Thank you to everyone who has supported us these past 9 years. 

There will be no #gyncsm chat in October 2022. 

Save the date for our next chat on Wednesday, November 9, 8pmET when we’ll discuss Recurrence - reducing your risk and making treatment decisions.

See you in November!

Dee and Christina

Clinical Trials: When, How and For Whom - 9/14/22

It's Ovarian Cancer and Gynecologic Cancer Awareness month! 

Thanks for all you do to raise awareness.

We hope you will join Christina and I on Wednesday September 14, 2022 at 8pm ET as we chat about Clinical Trials. We will concentrate on when and who should consider clinical trials and how to find and take part in a clinical trial. If you have taken part in a clinical trial, we invite you to join us and share your experience and help others feel comfortable taking part in a trial.

And another reason to join us is to help us celebrate our 9th Anniversary as a chat and Twitter community. 

 Guiding our discussion will be the following Topic Questions:

T1: What are some basic facts and key points about clinical trials that people should be aware of?

T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial?

T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time?

T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers?

T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.?

T6: What questions are important to ask when contacting the study team? What factors should be considered?

T7: For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience?
If you have not participated in a clinical trial, what are some reasons you did not?

For more information on Clinical Trials, here's a Clinical Trial Jargon Busting Guide from PEN: https://powerfulpatients.org/2019/12/02/understanding-clinical-trials-a-jargon-buster-guide/

And did you know that there are different types of clinical studies? Check out the NIH infographic below which shares some helpful information.

See you on Wednesday!

Dee and Christina

March 10, 2021 Disparities in Gyn Cancer Diagnosis and Treatment

The #gyncsm community welcomed Dr. Dineo Khabele (@DKhabeleMD), Washington University School of Medicine gynecologic oncologist to this month's chat on Disparities in Gyn Cancer Diagnosis and Treatment. Advocates, researchers and health care providers participated in our important discussion. 

Here is a sample of the responses to our topic questions.  You may read the complete transcript here and additional analytics here. 

T1: What are cancer disparities? What factors can contribute to cancer disparities? 

• Disparities range from race or ethnicity, to location, to age, gender identity, socioeconomic status, disability, insurance coverage, etc. All of these and more contribute to cancer care.
• Cancer disparities are differences in the incidence, prevalence, and mortality among specific populations. Contributing factors are social determinants of health, healthcare systems, and discrimination. 
• "Cancer affects all population groups in the United States, but due to social, environmental, and economic disadvantages, certain groups bear a disproportionate burden of cancer compared with other groups." NCI
• Don't forget the rarity of the cancer. Rare cancers, including gyn ones, generally get less funding for research and support services. #sarcoma
• “Your zip code matters more than your genetic code.”
• Society, financial, ethnicity, geography, gender identity.... So many people don’t get the care they need and deserve.

T2a: What are some of the cancer disparities that show up in the diagnosis of gynecologic cancers? 

T2b: What are some of the cancer disparities that show up in the treatment for gynecologic cancers?

• African Americans are more likely than Caucasians to be diagnosed with regional or distant stages for most cancers. Hispanic women are 40% more likely to receive a #cervicalcancer diagnosis. Asian Americans are at 5x the risk! 
• Black women and Latinas are more likely to be diagnosed with advanced stage disease.
• per @theNCI the incidence rates of colorectal, lung, and cervical cancers are much higher in rural Appalachia than in urban areas in the region.
• Lack of access to follow up for an abnormal Pap test or abnormal uterine bleeding also contributes to delays in diagnosis.
• We know African American women are DYING at 2x the rate as their Caucasian peers. We also see disparities in the stigma attached to an HPV-related cancer, gender identification, socioeconomic status, and location, location, location
• Black women are less likely to be operated on by a high-volume surgeon or to be offered clinical trials. This leads to worse outcomes.
• mentioned in the @AACR Cancer Progress Report: "African American and Hispanic patients with early-stage cervical cancer are more likely to forgo surgery, which is the standard of care, compared with white patients (17% and 12% vs 9% respectively)"
• In #gyncsm care especially, high-case volume and gyn-onc specialists have statistically better outcomes. So the disparities in access and overall can really hit hard.

T3: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity? 

• Endometrial and cervical cancer have some of the largest racial disparities among all cancer disease sites. This may be partly due to the double whammy of poor quality care for patients who are WOMEN and BLACK.
• Black women (not just in the U.S.) are more likely to be diagnosed with uterine #sarcoma, which tends to be more aggressive than endometrial carcinoma.
• @KemiDoll is a leader in this field. Racism is a driving contributor to poor outcomes in #endometrialcancer.
• although endometrial cancer disparities for decades were assumed to be related to genetics @KemiDoll brilliantly demonstrated how care for Black women with #endometrialcancer is delayed.
• It is great to see researchers leading the way into figuring out the disparities in endometrial cancer and groups like @ECANAwomen who are supporting the research and the women.
• Multiple factors. Some I think about 1) delays in diagnosis and work up of abnormal bleeding 2) inadequate or no surgery 3) biases affect adjuvant therapy recommendations or uptake 4)% higher high risk histology— we need more work there!
• Decades and billions of dollars of funding have shown these are not genetic difference. The healthcare system needs to re-evaluate how we have failed women who are Black with #endometrialcancer
• Historically, People of Color were not represented equitably and statistics show: African Americans are 13% of US Population but only 3% in oncology trials, Hispanics 19% of US Population but only 6%. Disparities can be minimized with health equity and access to care.

T4: American Indians and Alaska Natives have higher incidence and mortality rates for cervical cancers and higher mortality for uterine cancer. What role does future research play in addressing disparities such as these?

• Racism in healthcare delivery is a huge problem. We’ve been looking at the lit and many researchers have found that implicit bias and anti-radicals training is desperately lacking in healthcare education
• We need to bring screening to their location and programs to reduce risk https://www.cdc.gov/cancer/dcpc/research/articles/cancer-AIAN-US.htm
• Groups like @AICAF_Org are working in native communities to address cancer disparities. Research for gyn cancer is already on the low side. Then add that the treatment studies are mostly caucasian participants and you can see the challenges.
• We need more research in these communities about the experience of women diagnosed with the cancers too to understand the missed opportunities best. I suspect issues of access to health care system and delayed work ups contribute
• T4: Serious kudos to Amanda Bruegl, M.D. who is a great resource on disparities related to gyn cancer in Native Americans. She has been looking at HPV vaccine uptake, access to care and historical disenfranchisement as causative of poor outcomes in #cervicalcancer.
• Similar to other marginalized and minoritized groups, social determinants of health are the main drivers for these disparities in Native American communities. We need to involve affected communities in research and care.

T5: What are some population groups beyond racial and ethnic minorities for which cancer disparities in the U.S. exist?

• People with disabilities typically have lower cancer screening rates than people without disabilities. They face barriers like transportation, wait time for appointments, and difficulty getting to an appointment.
• Lower screening rates are also seen in the LGBTQ+ community. Common barriers include fear of discrimination and lack of information. It is important to "screen the body parts you have.
• Individuals from the LGBTQ+ community experience cancer disparities due to structural discrimination and social determinants of health. For example, transgender men with a cervix are less likely to receive cervical cancer screening tests.
• The rural/urban disparities are pretty stark with gynecologic cancer. There are also age disparities - some due to "too young for cancer" thinking.
• Remote geography decreases access to care. #gyncsm. We need to partner community healthcare with larger health care systems.
• The issue of bias against women influences all the care that women with #gyncsm receive. The cancer center's focus is rarely gynecologic. Funding for gyn cancers is disproportionately low. Gynecologic oncologists are under-represented in healthcare leadership.
• We can include underinsured / uninsured, and language barriers to our groups too.
• Rural and urban disparities have to do with lack of access to quality care. Agree with age myths. We are diagnosing endometrial cancer at younger ages.  
• Transportation is a huge barrier. Rural patients and caregivers struggle to make it to appointments, pay for gas, take time off of work.

T6: What are some resources and groups helping to address disparity and equity issues? How can advocates help to reduce gyn cancer health disparities in our own communities?

• We [Cervivor] are here for anyone diagnosed with #cervicalcancer. For LGBTQ resources: @cancerLGBT For People with Disabilities: @CancerLegalHelp We believe sharing your story matters. You have the power to shift the narrative!
• Patient Advocates should center marginalized voices! Surround yourself with patients from diverse backgrounds as much as you can to understand the different challenges and complexities.
• Resources @GYNCancer @SGO_org. Advocates can raise awareness in their communities, become research advocates, and lobby for more funding for research and care.
• we need to make policy changes @ACSCAN has a chartbook and is working on policy https://t.co/INVqSyfYVF
• Talk with your nurse, your doctor and your care team. Local resources may often be the best resource for patients. Eliminating inequities begins locally, extend regionally and gains traction nationally.
• @SGO_org recently made this joint statement https://www.sgo.org/news/joint-statement-collective-action-addressing-racism/
• More on the survivorship aspect, but sharing information about the side effects of treatment may help lessen disparities due to lack of treatment toxicity support A good organization for pelvic radiation from the UK is @PRDA_uk
•  If you’ve never seen it the classic documentary Southern Comfort is an excellent watch for those of us who care about disparities in Gyn Cancer. https://transguys.com/videos/southern-comfort
• While social determinants of health play a great role in #healthdisparities, there is evidence that health professionals themselves contribute to health disparities through non-inclusive medical processes and biased interventions.
• And these community partnerships would be incredibly beneficial to cultivate BEFORE screening/diagnosis. Meeting people where they are for community health education PRIOR to a time of need can help reduce disparities down the road.
• Groups like @IamCervivor @ECANAwomen @ucan2020 @SHAREing are doing excellent work. I'm missing many so if you are working in the space of disparities, please let me know.  

Note: There will be no #gyncsm chat in April. Save the date for our next chat Wednesday, May 12, 2021 at 8pmET (new time for 2021) when we’ll discuss “Cancer Survivors: Risk of Recurrence and Other Cancers/Diseases”.

Stay Safe,

Dee 

Additional Resources Shared

Geographic disparities in the distribution of the U.S. gynecologic oncology workforce: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5699889/

Palliative care: Racial and ethnic disparities in palliative care utilization among gynecological cancer patients https://www.sciencedirect.com/science/article/abs/pii/S0090825820341597

@AACR report https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2020/09/AACR_CDPR_2020.pdf

 

Disparities in Gyn Cancer Diagnosis and Treatment - March 10, 2021 Chat

We are grateful that joining us for this month's chat on Disparities in Gyn Cancer Diagnosis and Treatment will be Washington University School of Medicine, gynecologic oncologist Dr. Dineo Khabele (@DKhabeleMD). The chat will be  held on Wednesday, March 10, 2021 at 8pm ET (7pm CT, 5pm PT) which is our new time slot.

Using the following topic questions we will discuss factors that contribute to health care disparities in general and gyn cancer disparities in particular and examine what organizations and health care systems are doing now to reduce disparities and what role advocates can play in addressing disparities in our communities.

T1: What are cancer disparities? What factors can contribute to cancer disparities? 

T2a: What are some of the cancer disparities that show up in the diagnosis of gynecologic cancers? 

T2b: What are some of the cancer disparities that show up in the treatment for gynecologic cancers?

T3: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity? 

T4: American Indians and Alaska Natives have higher incidence and mortality rates for cervical cancers and higher mortality for uterine cancer. What role does future research play in addressing disparities such as these?

T5: What are some population groups beyond racial and ethnic minorities for which cancer disparities in the U.S. exist?

T6: What are some resources and groups helping to address disparity and equity issues? How can advocates help to reduce gyn cancer health disparities in our own communities?

You can find an overview on the topic of Cancer Disparities from the National Cancer Institute at https://www.cancer.gov/about-cancer/understanding/disparities

Professional organizations in obstetrics and gynecology, including the SGO, have issued a Joint Statement of Collective Action Addressing Racism. The statement includes actions that can be taken - Collaboration, Education, Recognition and Scholarship, Inclusion, Caring for Patients, Policy and Advocacy. You may read the statement at https://www.sgo.org/news/joint-statement-collective-action-addressing-racism/

We hope you can join us in this important discussion. 

Dee and Christina
#gyncsm Co-founders 

PS: Don't forget the SGO Meeting (#SGOMtg) Virtual Meeting takes place from March 19-25. Register at https://www.sgo.org/events/annual-meeting/

February 10, 2021 Communication and Support Chat

We were happy so many in our community could join us for our first chat of 2021. Communicating With Your Health Care Team and Asking For Support drew twenty-seven participants from the US and internationally, too. You may find the transcript here and analytics here. 

Here is a small sample of the responses to our topic questions. 

T1: How would you describe what constitutes good communication with your health care team?

T1 Good communication means multi-discipline coordination, collaboration, and decision making to include the patient, innovation, and caregivers.

T1: Allowing time for questions & being responsive to questions. Getting results in a timely manner.

Our @CancerHopeNet survivors often tell me that it's critical they're communicating WITH their team, not just being dictated to (intentionally or unintentionally). Respect for personalities, beliefs and cultures is critical.

T1: Feeling heard and seen. Feeling understood. Would be amazing to feel that coordination would happen between different doctors/specialists/pharmacies with burden not all on patient for care coordination

From physician perspective, overall goals are explained at a patient centered level, daily goals are discussed with nursing staff, residents have clear idea of plan, and most important the patient feels heard and at the center of it all

T1: Good communication involves not just listening but also taking nonverbal cues from patients during the conversation. It's also very important for patients to feel comfortable asking questions to their attending and go home with a clear understanding of the situation

T2a: How has communicating with your team changed during your cancer experience?

T2: It’s been less frequent. I recently transitioned to the Nurse Practitioner. Feeling a little disconnected. Grateful to be where I am though 

T2 A I learned to not be shy and speak up and ask for things and that helped my team know what I needed help with.

T2: I think at first you don't know what questions to ask. I think that is when hearing from your doctor about patient organizations and peer support might best help. Many have a "list of questions" and FAQs. Getting that info early can help guide what to ask dr. 

T2: I haven't tried any telehealth appointments yet, but I hope they are here to stay where they make sense. i.e. that insurance will keep covering... 

T2b: Has communication between you and your healthcare team been impacted by the Covid-19 pandemic?

T2bCOVID has added such a layer of complexity to good communication! Everyone is so stretched when you call it's hard to get to the right person and if someone calls back you're repeating your story over and over or clearing up misunderstandings. 

T2b. #gyncsm this hasn’t impacted me directly: but those in my life have had repeat treatment paused. Difficult to get hold of consultant but nurse team been great

T2b: I think that telemedicine now plays a bigger role in patient consultations, but where I come from it's not readily accessible to all. And now, you have to be extra observant with patients' eye expressions since that's all you can see.

T3: Have you discussed clinical trials with your provider? How was that information communicated? Did you bring up trials or did your provider?

T3 Physician recommendation is the most important factor in patients decisions to enroll onto a #clinicaltrial. If your doctor doesn't discuss this option consider asking and/or getting a second opinion.

T3: It is tough to squeeze lots of stuff into appointments and small communication outside of appointments. Clinical trials and supportive care and side effects - so much beyond treatment to ask about and plan out.

T3 @cure_magazine shared some insight into Why it is never too soon to ask about trials . https://www.curetoday.com/view/why-it-s-never-too-soon-to-consider-clinical-trials-as-a-treatment-option

T4: What would you suggest to your health care team or health care system that would improve communication? What would you suggest to patients to improve communication?

T4: to improve communication I would recommend that there is frequent communication between the gyn onc & med onc. I would recommend that doctors not be intimidated by patients who like to ask questions.

T4: I'll raise my hand and say I don't always "do my homework" and go into a medical encounter with clear goals about what I want to discuss or walk away with. I need to block some time between appts to focus.

T4. #gyncsm Get a patient advisory group / lived experience group together online and ask them how communication can be improved. #coproduction is possible even during #covid19

T4: I’d suggest asking patients what they want & need & making sure patient feedback is included in notes. Often what patient might define as an adverse event or not differs than medical team assessment. We need to record what patient’s say.

T4: @gyncsm My oncologist is often surprised I’m in groups with 100s to 1000s of other patients comparing symptoms, side effects, & treatments with people all over country & world. We are influenced by what other patients say about a drug, for ex., not just clinical studies

T4. Timely updates to patient records and a patient survey immediately after a visit. I'd also ask that teams not see innovation as the enemy of coordination.

T4: I think spacing out appointments has helped me give enough time for each patient consult so that I can still answer questions. I also tell my patients to list down things they forgot to ask and tell me on the next visit. 

T4: Also, I appreciate it when patients ask me about what they find on Google rather than acting on these info directly and possibly getting into harm's way. More and more patients are on the Internet and doctors should be prepared to handle these "external" info. 

T5: What is the best advice you have received to communicate your need for support - emotional or physical - with your health care team?

t5: That’s a tough one. I think in life, I’ve always been a fighter. And I also want to understand things. I’ve always advocated for myself and I think the best advice is to continue to always advocate for yourself. 

T5: #CervivorAmbassador Becky Wallace shared her advice in this blog post. cervivor.org/the-power-of-s… 

T5 #gyncsm That the National Health Service #NHS IS STILL OPEN during #covid19 don’t delay if you have any concerns

T6: How do you prepare for visits with your health care team?

T6 I keep a medical journal. My prep includes writing down questions, asking about meds, and general health questions if I've noted any adverse reactions.

t6: I keep a running “note” in my phone for my next appointment. I list any questions that I would like answered or any issues I’ve been having so I don’t forget to mention. #gyncsm 

T6: Keep a notebook and write down questions in between appointments so you don't forget them. Ask who is on your team and write their info. My little notebook was filled by the time I finished 9 cycles. Ask for copies of all test results. which could lead to more ?'s. #gyncsm

Questions! Questions! Lists of things I need to remember to ask.

We end out chats with TIL standing for Today I Learned. Here are just a few examples from tonight's chat. 

TIL Good communication between the patient and the healthcare team is one of the keys to effective care delivery and patient satisfaction. It's a crucial area that should be actively worked on by all stakeholders. #gyncsm

til: How doctors have been impacted by COVID & how it’s been more difficult to “read” patients & make sure they are heard. 

TIL #gyncsm made me remember how important #PeerSupport is right now

 

Christina and I look forward to seeing you at the next #gyncsm chat on Wednesday, March 10, 2021 at 8pmET when we’ll discuss “Disparities in Gyn Cancer Diagnosis and Treatment”. See you all then!

Dee 

#gyncsm Co-founder

 

 

Related Reading:

ASCO Patient Clinician Guideline 

https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues#/27581

@canceradvocacy Survivorship Toolbox-Communication
https://canceradvocacy.org/resources/cancer-survival-toolbox/communicating/

@NPAF_tweets Skilled Communications in Shared Decision Making: A Tool Kit for Health Care Providers and Advocates

https://www.npaf.org/patients-and-caregivers/skilled-communications/

Assessing communication tool @RTI_Intl for researchers physicians
Researchers have found a link between PCC and greater patient satisfaction, treatment adherence, and quality of life. https://www.rti.org/impact/patient-centered-communication-cancer-care-instrument

OC survey Reveals Need to improve patient-provider communication
Resources before during and after appointments:
https://www.ourwayforward.com/ovarian-cancer-support-and-resources/communicating-with-hcp-team

Our Way Forward Survey Results
https://www.oncnursingnews.com/view/ovarian-cancer-survey-reveals-need-to-improve-patientprovider-communication
Our Way Forward - https://www.ourwayforward.com/

Nurse / patient communication
https://www.oncnursingnews.com/view/patient-nurse-communication-is-key-in-ovarian-cancer

Doctors need to talk to each other
https://conquer-magazine.com/issues/2020/vol-6-no-6-december-2020/1441-poor-communication-affects-patients-doctors-should-talk-with-the-patient-and-each-other

Telehealth
https://conquer-magazine.com/issues/2020/vol-6-no-3-june-2020/1284-telehealth-can-help-patients-with-cancer-during-covid-19-but-does-not-replace-in-person-treatments

Communicating with your Health Care Team & Asking for Supportive Care

 

It's been a few years since the #gyncsm community has spoken about how to communicate effectively with your health care team. Many things have changed since then. There are more treatment options for women to consider and discuss with their gynecologic oncologists and other oncologists. More women are asking about enrollment in clinical trials. And the pandemic has caused a change in the way patients and their healthcare team talk, from face-to-face meetings to telehealth visits and phone calls. Many women need emotional support and palliative care to help alleviate side effects from treatment but are unsure how to go about requesting that help.

We hope you will join us on Wednesday, February 10, 2021 at our new time 8pm ET, 7pm CT, 5pm PT as we discuss Communicating with your Health Care Team and Asking for Supportive Care. 

Guiding our discussion will be the following Topic (T:) Questions:

T1: How would you describe what constitutes good communication with your health care team?

T2a: How has communicating with your team changed during your cancer experience?

T2b: Has communication between you and your healthcare team been impacted by the Covid-19 pandemic?

T3: Have you discussed clinical trials with your provider? How was that information communicated? Did you bring up trials or did your provider?

T4: What would you suggest to your health care team or health care system that would improve communication? What would you suggest to patients to improve communication?

T5: What is the best advice you have received to communicate your need for support - emotional or physical - with your health care team?

T6: How do you prepare for visits with your health care team?

Since most of what we will share and discuss is not limited to gynecologic cancers, feel free to invite others impacted by cancer to join us for this discussion.

 

See you on Wednesday!

Dee and Christina

Getting Into a Clinical Trial - February 13, 2019

This month's chat, Getting Into a Clinical Trial, allowed our participants to learn from experts and our community to share resources which help patients find and decide on a clinical trial.

In addition to our health care moderators Drs Temkin, Westin and Becker-Schutte, we were joined by Dr. Christina Annunziata (@CMAnnunziata), Clara Health (@aaronjun_, @Clara_Health), Clearity Foundation (@ClearityFnd), Lilly Trials (@LillyTrials) and Smart Patients (@RobinSmrtPtient, @smart_patients). Twenty-seven participants created 1.4 million impressions during the hour chat. You may find more analytics here.

Below is a sampling of responses to our questions. A full transcript may be found here.

T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?

• T1 it's important to know your medical history before looking for a #clinicaltrial. Type of cancer, stage, prior treatment.
• Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://www.clearityfoundation.org/clinical-trials-can-help/
• Before starting to look for trials, it can be helpful to read about the differences between standard care and receiving treatment as part of a trial. We wrote a guide highlighting the differences here! https://guides.clarahealth.com/preparing-for-your-clinical-trial/
• Every trial protocol is different, so knowing what matters in your trial search before you get started can help you narrow down the options. For example, how far you're able to travel, if there is family who can help take you to visits, taking time off work etc.
• at any point in decision making, patients need to know a much as they can about their disease state/progression, resources (financial, logistical, medical team, etc.), & approved treatment/therapy options. Without that info, it’s hard to make an informed choice. 

T2: Where can patients search for trials? What key words are helpful? Are there specific search sites for gyn cancers?

• Your doctor should want to discuss the possibility of #Clinicaltrials with you. And help decide what's right for you.
• Our Guided Trial Finder is the only #ovariancancer focused clinical trial search engine that currently exists, free of charge. To find a trial, click here: https://forms.clearityfoundation.org/find-clinical-trials/ 
• Search engines on clinical trial databases like https://www.clinicaltrials.gov/ or https://www.lillytrialguide.com/en-US are a great place to start learning about enrolling clinical trials across conditions or diseases.
• To find a #clinicaltrial - there are a number of key resources. Your MD can help, as can a local research navigator. Search engines like https://clinicaltrials.gov/ or local institution websites can help too! 
• T2: Clearity’s search tool for clinicaltrials is user friendly. The Emerging Med site looks promising (the clinical search tool done with SHARE). And FORCE has a clinical trial search tool specific to hereditary cancers.
• Aside from finding a trial, the steps to connect with the right individual from the clinic, insurance, and travel can be its own (huge) challenge. https://clarahealth.com/ not only helps patients find a trial but also joins them through the entire process of enrolling
• To find @theNCI trials, they have their own finder and an 800 number with navigators https://www.cancer.gov/about-cancer/treatment/clinical-trials/search
• T2: There are several key trials specifically for women with gyn cancers. some can be found through @NCICCR_WMB https://ccr.cancer.gov/womens-malignancies-branch 

T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria? 

• @SGO_org has a clinical trial glossary to help understand the terms used https://www.sgo.org/patients-caregivers-survivors/clinical-trials/clinical-trials-glossary/
• Each person has their own trial preferences, but if you ever feel like you’re being pressured to sign up for a trial without the time to make an informed decision, DO NOT CONSENT. It’s not informed consent if you don’t have time to be informed. 
•  Whether the trial is open AND currently accepting patients is definitely important to figure out. Then you can start looking into if you qualify - some things may keep you out (exclusion criteria) and some will match (inclusion criteria)
• @theNCI dictionary of cancer terms is helpful as your read through trial descriptions: https://www.cancer.gov/publications/dictionaries/cancer-terms
• T3: When designing a study, the research team specifies guidelines about what kind of patients the treatment is meant to target, which are the "eligibility criteria" that specify who can participate.
• @CISCRP has great resources on explaining what a clinical trial is & what eligibility criteria are.
• We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials.
• Smart Patients has an integrated glossary and members who can explain terminology and inclusion/exclusion 

T4: When contacting the study team, what questions are important to ask? What factors need to be considered?

• T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray. 
• T4: Tip: Prior to meeting with the research coordinator or doctor, write down possible questions to ask. You may find it helpful to bring a friend or relative with you as another set of ears to hear the responses to your questions.
• T4: Prior to enrolling in a trial, specifically phase I studies, questions about the # of patients already treated, drug effectiveness & side effects are important to ask. Check out our list of helpful q's to ask when contacting the study team: https://www.clearityfoundation.org/trials-questions-to-ask/ 
• You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel 

T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? 

• Have your records ready, read over the protocol (if you need help, https://clarahealth.com/ offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have.
• During informed consent, a member of the trial team will go over the trial in depth to make sure you understand all the details. Bringing a family/friend if possible to help take notes can reduce the information overload from the long informed consent process! 
• Every clinical trial must have a study protocol approved by an Institutional Review Board and FDA. Key features of the study protocol are available to the public on websites like https://www.clinicaltrials.gov/ 
• Bring a Caregiver/ friend . Two ears are better than one. Have some questions written out ahead of time, take notes. Don't be afraid to ask questions and for a tour of the treatment area.
• T5: Study protocol: complete outline of study often looks intimidating. Ask about what you don't understand. Write down trial NUMBER
• T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! 

T6: What advice do you have for patients who are choosing between trials when there are several options?

• T6: Look for a trial that guarantees you the treatment you want (no undesirable treatment arms in the study)
• T6: "Patients can check our website to see if the effectiveness and side effects of any of the trial drugs have already been reported. We show results for all standard chemotherapies and drugs in advanced clinical trials.” (1/2)
• T6: "We want to make it easy to find these results so that women don't have to spend hours trying to find the right information to help them make informed choices about treatment options.” – Clearity’s Scientific Director, Dr. Deb Zajchowski (2/2)
• T6: If possible, after speaking with the study teams, you may want to talk to your family, primary care physician, and an additional source for a second opinion before choosing which to enroll in. Everyone can bring a different (equally important) perspective!
• T6: you can choose the right trial for you based on if it is selected for your tumor type vs. an "all comers" design. Other considerations are toxicity, logistics, and any known efficacy
• T6: If you want to learn more about the investigational drug in the study, you can search for published information in peer-reviewed medical journals.
• T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc)

These two comments are important for everyone to know:

• Participating in a #clinicaltrial is voluntary
• You *always* have the right to say no & leave a trial. 

In addition to those resources shared in the comments above, you may find additional resources below.

A special congratulations to #gyncsm health care moderator Dr Shannon Westin for being chosen for CURE Media Group 2019 Ovarian Cancer Heroes®.

We will not be holding a #gyncsm chat in March. Please save the date and join us on April 10, 2019 at 9pm ET as we discuss The Origination of High Grade Serous Ovarian Cancer with Dr Ronny Drapkin.

Remember to share information of interest to our community by using the #gyncsm tag.

See you in April!

Dee
#gyncsm Co-founder

ADDITIONAL RESOURCES

LillyTrial's TrialGuide Blog
https://blog.lillytrialguide.com/

Lilly 10 Things You Need to Know about a Clinical Trial
https://www.lillytrialguide.com/en-US/about-clinical-trials?twitterfocus=3#/tenthings?utm_source=twitter&utm_medium=organic&utm_campaign=ltg&utm_content=ltg_117

Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/

Understanding Gynecologic Clinical Trials - Video Produced by the Society of Gynecologic Oncology (SGO) and the Foundation for Women’s Cancer (FWC)
https://youtu.be/UFGb8nQkE8c

@CancerTodayMag Tomorrows Trials https://t.co/xpCxw99tZt

@cure_magazine Clinical Trial Exclusions https://t.co/t3dLp1lZOz

February 13, 2019 - Getting Into Clinical Trials Chat

During the past few years our community has talked about Clinical Trials a number of times. We talked about different types of clinical trials, how clinical trials have changed, new trial designs - such as basket trials and the @ASCO TAPUR trial - and the inclusion of Patient Reported Outcomes in clinical trials. A theme that kept repeating during these chats was the difficulty gyn cancer patients had in finding clinical trials they could enroll in. So this month #gyncsm will spend time talking about Getting Into a Clinical Trial. 

Prior to the chat, we encourage you to review these resources

Lilly's TrialGuide Blog
https://blog.lillytrialguide.com/

Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/

and watch this video from The Foundation for Women's Cancer

Understanding Clinical Trials

Guiding our discussion will be the following Topic Questions (T:)

T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?

T2: Where can patients search for trials? What key words are helpful? Are there specific search sites for gyn cancers?

T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria?

T4: When contacting the study team, what questions are important to ask? What factors need to be considered?

T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent?

T6: What advice do you have for patients who are choosing between trials when there are several options?

Bonus Topic - time permitting: Outside of eligibility criteria, what kept you or a patient you know from enrolling in a trial? How are trials changing to reduce trial participation barriers?

Invite your friends and join us on February 13, 2019 at 9pm ET (8pm CT, 6pmPT) for an informative discussion. We will have a number of researchers and clinical trial experts joining us. 

See you then.

Dee 

#gyncsm Co-Founder

Oct 11, 2017 #clinicaltrials - How have they changed.

We were very pleased to have ASCO, American Society of Clinical Oncology (@ASCO), join us to discuss the importance of clinical trials and their TAPUR Study as part of our chat on #clinicaltrials. This month's chat participation number was our 4th largest ever with fifty-one participants.

You can find the complete transcript here and analytics here.

To provide you with an idea of what our chat discussion was like, below you will find a sampling of the answers to our questions.

T1: What role do #clinicaltrials play in cancer treatment advances? What are some of the key trial design changes in the past 5 yrs?

• T1: #Clinicaltrials are key to helping us better prevent & detect cancer, find new & better treatments, & manage side effects
• T1: New trial designs let us study multiple cancers/treatments at the same time & learn which therapy works best for each patient
• T1: It's important for patients to understand that #clinicaltrials are NOT the treatment of last resort.
• T1: New trial design: "basket trial" offer single treatment for all cancers with specific biomarker (like ROS1 fusions)
• T1: "Umbrella" trials have multiple therapies for one type of cancer (ie ovarian) - the arm may be chosen based on molecular testing
• Immunotherapy is definitely trending as a treatment for many types of cancer and it is only in its infancy. Exciting!
• Another non- randomized Trial is the precision medicine trial know as NCI-MATCH Trial

T2: What is TAPUR? Why did @ASCO develop this trial? Who can participate? What makes TAPUR different from other trials?

• T2: #TAPUR stands for the Targeted Agent and Profiling Utilization Registry Study and is our first clinical trial ever
• T2: The study matches pts w/ targeted therapies based on tumors’ specific genomic profiles 
• http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study
• T2: Our CMO @rschilsky and Past Pres. @DrJulieVose explain why ASCO developed the TAPUR study in this video: https://t.co/j9qEuIY3tY
• T2: TAPUR is for pts >12yo w/ adv. cancer & at least 1 genomic alteration targetable by a study drug. More: https://www.tapur.org/patients
• T2: TAPUR is designed to include a broader patient population than most trials & to mirror real-world clinical practice
• T2: Check out the study website https://www.tapur.org/ & FAQs https://www.tapur.org/node/31 for more details! 
• T2: TAPUR is an option for patients to access targeted drug that is approved for a different cancer than theirs
• T2: For example, patient with ROS1+ cancer that started in colon can get ROS1 targeted drug approved for lung cancer

T3: What are Patient Reported Outcomes (PRO)? What progress have you seen on ensuring that trials meet patients' needs/interests?

• T3: PROs are anything reported directly by the patient, like symptoms or emotions. They reflect how patients feel & function
• T3: PROS - patient reported outcomes help determine the impact novel treatments in a clinical trial have on #QOL (quality of life)
• T3: More trials are incorporating PROs so outcomes can be measured against pts’ needs/interests https://am.asco.org/daily-news/rise-patient-reported-outcomes-oncology
• T3: Research has shown that when patients self-report symptoms, they have better outcomes https://t.co/cjl8npOxVE
• Self-reporting symptoms can serve to make patients feel more involved and they may be more open to sharing symptoms. This is great!
• Critically important to include & capture. Preferred Dr outcomes vs patient outcomes sometimes don't align

T4a: Have you been involved in a #clinicaltrials?

• T4 my brother was in a clinical trial for stage 4 colon cancer. It looked at EGFR+ drugs +/- avastin
• T4a: My cancer progressed after two different lines of chemo/rads. Targeted therapy clinical trial had me NED at first scan!
• I've participated in some interview studies and am signing up for PROMPT re: genetic variants related to cancer. 
• I was in a phase 1 on initial DX for OC. I also have - or rather my tumor tissue has been in a few other trials
• I have been involved as an investigator in #clinicaltrials for years! Have never participated in one - but I would…
• T4a gathering tests/labs to begin immune therapy trial next week PPC 3c

T4b: If yes, what benefits or drawbacks did you experience? If no, what were some of the reasons? Were trials offered to you?

• Drawbacks of trials: hard to find "best" trial for you, may require travel & time away from family, varying level of risk
• T1b: Benefits of trials: receive AT LEAST standard of care, see top cancer docs, might help future patients as well
• my brother did well on trial, extended his life. trial helped clarify treatment. Brother also saw altruistic benefits
• T4b not offered. Have asked onc about using AI to prevent recurrence. Answer: not studied. Me: R U studying? Ans: no.
• A lot of doctors mention only the #clinicaltrials at their hospital.
• Patient communities continue to be one of the best places to find out about trials. There are groups trying to make it easier
• Because of #sarcoma & gynonc silos, women with sarcoma may not hear about trials run by different docs.

T5: Per @SGO_org, there is a crisis in gyn cancer trials. How can #gyncsm support research and encourage participation in #clinicaltrials?

• T5: #gyncsm can continue great advocacy work and spread the word about the benefit of #clinicaltrials
• T5: Educate yourself & share info with others! Online patient communities & chats like this one are a great start
• T5: Find ways to help more #gyncsm patients get molecular testing and join "basket trials" for any solid tumor type.
• Resource | Gyn Trials Crisis Fact Sheet from @SGO_org https://www.sgo.org/wp-content/uploads/2012/09/SGO-Clinical-Trial-Crisis-FINAL.pdf
• T5 @CancerDotNet has great resources on clinical trials: http://www.cancer.net/research-and-advocacy/clinical-trials
• T5: Call your congress person.
• T5: Contact your lawmakers & urge them to support research by increasing funding for @NIH and @theNCI
• T5: Consider having your #gyncsm tumor undergo broad genomic testing to help researchers identify targetable genomic drivers.
• @ClearityFnd can help with tumor profiling for #ovariancancer
• @SGO_org working on a #gyncsm specific #clinicaltrial search engine that we hope will simplify the process

We appreciate the insights and knowledge of those who participated in tonight's chat. And we hope as a community we will continue to educate women and their caregivers about clinical trials.

Additional resources from the chat are shared below. 

We hope you will join us on November 8, 2017 at 9:00pm EST for our chat on Endometrial and Uterine Cancers. See you then.  

Dee

#gyncsm Co-founder

RESOURCES:

Video | Understanding Gynecologic Cancer Clinical Trials from @GYNcancer
https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be

Understanding Clinical Trials - Your Guide from @GYNcancer
http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Clinical-Trials-Your-Guide-Brochure-web_updated.pdf
 
Diversity in Trials 
http://www.cancertodaymag.org/Summer2017/Pages/A-New-Look-for-Clinical-Trials-Diversity.aspx

ASCO guide: new trial designs & precision medicine
http://www.asco.org/research-progress/clinical-trials/clinical-trial-resources/clinical-trial-design-and-methodology

ASCO Broadening Trial Eligibility Criteria to Make Clinical Trials More Representative
http://www.asco.org/research-progress/clinical-trials/clinical-trial-eligibility-criteria 

Designing trials for adolescents 
http://www.cancertodaymag.org/Summer2017/Pages/More-Options-for-Adolescents-in-Clinical-Trials.aspx

NCI-MATCH info
https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match

TAPUR
https://www.tapur.org/

About TAPUR on @cancerdotnet 
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study

The National Quality Forum report on PROs
https://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx

Patient Safety in Clinical Trials | Video by @theNCI 
https://www.youtube.com/watch?v=y7TDwbrD7GQ&feature=youtu.be

Patients’ willingness to participate in clinical trials
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4706669/

Physician and Patient Participation in Cancer Clinical Trials
https://www.ncbi.nlm.nih.gov/books/NBK220370/