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.
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
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
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.
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
