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!
@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
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
