The Tigerlily Foundation hosted #TLCTransform Chat: Pivoting, Partnerships, and Purpose During and After #COVID19, on May 20th, 2020. An expert panel joined a diverse cadre of patients, clinicians, advocates, and other breast cancer stakeholders in an exploration of a care environment disrupted by COVID-19 and what’s being done to meet the needs of patients.
The Panel included:
- Tiah Tomlin, Co-Founder and Executive Director, My Style Matters @MyStyleMatters2
- Maimah Karmo, President, Tigerlily Foundation @Maimah
- Jesus Anampa, Oncologist, MD, MS @jesusanampa
- Gil Morgan, Oncologist, MD
- Liza Bernstein, Patient Advocate @itsthebunk.
There was widespread agreement that the COVID-19 pandemic has shaped every aspect of how patients experience breast cancer, but direct patient care and psycho-social needs have been especially affected by disruption and adaptive responses.
T1 The Pivot: the COVID-19 pandemic has forced us all to stop and adapt and do things differently, for better or for worse.
The pandemic finds each stakeholder with a mix of old and new responsibilities with diminished certainty about how to get things done
Clinicians are responsible to provide care in the context of new personal risks and the possibility of covering patients for peers who might fall ill.
in oncology this pandemic has allowed us to pivot by working more together than ever before. Remember that we have to meet the demand of colleagues falling ill. So we all have to step up to make sure there are enough doctors to take care of our patients #TLCtransform #COVID19— Gil Morgan (@weoncologists) May 21, 2020
The serious risks and strain posed by COVID-19 has disrupted the scheduling of tests and increased the use of telemedicine.
Nobody was ready for #COVID19. Our first priority is patient safety— ????? ?????? ?.?, ?.??? (@jesusanampa) May 21, 2020
??telemedicine for patient care/clinical trial participation.
?? patient travels for visits or tests(that could be delayed)
Teamwork became virtual with in-house & external collaborators #TLCtransform
Creative and flexible approaches to treatment modalities help clinicians assure continuity of care for their patients.
As a surgeon, getting great support from my med onc colleagues to use upfront hormone blockers allowing me to safely triage surgery for patients. Using Telehealth to meet many patients. Missing the chance for the exam room hugs. #TLCtransform
— Karen Hendershott, MD FACS (@ShottDoc) May 21, 2020
Lockdowns may give the impression that nothing is happening, or that life is canceled. Nothing could be further from the truth. Breast cancer doesn’t stop, and neither do Patient Advocates like @swaggsheila1
Advocacy work hasn’t stopped though. Sadly I’m still getting calls of women diagnosed with BC. I’m here to serve others. #tlctransform— swaggsheila (@swaggsheila1) May 21, 2020
Advocates like Liza Bernstein continue their work with higher levels of personal stress and demands for their help. They rely on technologies as physical travel is off the table.
I stopped all travel, of course, and have been doing lots via zoom, phone calls, etc. There is lots more stress and uncertainty so the burden for patients and advocates has increased. So trying to navigating it as best as possible! #TLCtransform— Liza Bernstein (@itsthebunk) May 21, 2020
Some patients in treatment and recovery can’t do without the technology that supports their telemedicine and community support.
I’m a 2x BC survivor healing from stageIV disease. I’m relying on tech more for doc communication. Trying also to connect with cancer community to provide hope and some bits of happiness! #TLCtransform— Pretty Wellness (@PrettyWellness) May 21, 2020
T2 The Partnerships: with the COVID-19 pivots we just discussed, like with any difficult situation, we know that partnering is one way to find our way through.
The relationship with patients is why we’re here. We must center it in all that we do.
Main collaboration is with our most important partners – patients.— ????? ?????? ?.?, ?.??? (@jesusanampa) May 21, 2020
We try that care is not affected by #covid19. They are concerned about being infected with #SARSCOV2
??Decrease frequency of visits to clinic(unless extremely required) #TLCtransform
Partnerships improve the resilience of our work.
I believe that partnering is always a plus as we don’t always know when we are going to need our partners to step in, however the degree of that partner’s presence can vary depending on your needs at the moment #TLCtransform #COVID19— Gil Morgan (@weoncologists) May 21, 2020
Advocacy groups should improve their efforts to reduce duplication and overlap as much as possible.
I agree. I see a lot of duplicated efforts between groups. For example: patient surveys. I answered 4 surveys from advocacy groups with the same questions on how #COVID19 is impacting cancer patients #wecanworksmarter #tlctransform— Sylvie Leotin (@sleotin) May 21, 2020
Approaching partnerships with an abundant mindset goes a long way in our world.
Yes. Which is why we have reached out to as many organizations and patient advisers as possible to learn what they are planning, so we can work together. If there is something someone else is stronger at, they can lead and vice versa, and we walk side by side. #TLCtranform— Maimah Karmo (@Maimah) May 21, 2020
T3 Our Purpose: When we encounter big changes, it often causes us to think about our purpose in life. Is this new environment of the pandemic transformative for you?
The pandemic is a tragedy, and it’s inappropriate to overemphasize its potential as an agent of change without keeping that in mind. Each pivot and every hard won drop of resilience comes from human suffering. The depth and diversity of our chat’s participants engaged this challenge by offering a clear vision of a better healthcare system shaped for the better by the lessons of COVID-19. This system is more compassionate about trauma, more equitable in terms of social determinants of health, and responsive to the desire for telehealth.
We find our purpose in the circumstances we face. Big moments call for big efforts.
We definitely feel our purpose has heightened due to the emergency response of COVID19 and we are mission focused more than ever to educate, advocate for, and support young women before, during and after breast cancer. #TLCtransform https://t.co/v4CtbRsWkd— Tigerlily Foundation (@tigerlilycares) May 21, 2020
COVID-19 reminds us that compassion is the center of all that we do in this space.
Not renewed, but definitely strengthened!! Seeing patients who come to us physically and often emotionally isolated definitely reminds me that I need to do my all & most of all compassion has to rule!! #TLCtransform #COVID19— Gil Morgan (@weoncologists) May 21, 2020
Working to reduce resistance to wearing masks and other essential public health measures is an important community based way to manage stress for immunocompromised patients. Changing our culture is the help.
Yes! Social distancing is a trigger for many persons previously exposed to periods of immuno suppression.— Stephanie Graff, MD, FACP (@DrSGraff) May 21, 2020
But a movement to normalize masks may make it easier for those who come after.
Always two sides to the coin. We are here for you, Liza. #TLCtransform
We all rely on meaningful connections to receive care or carry out our work. The pandemic is challenging us to bring our best selves to this moment in new and authentic ways.
I am also seeing a new human-centric way of partnering with people not just orgs… meaning more people are dropping the “mask”. Behind each org are humans who have the same need – for connection and who were created to serve. #TLCtransform— Maimah Karmo (@Maimah) May 21, 2020
Participants concluded by sharing their purposes in ten words or less:
A3. My purpose is to improve the cancer experience for all #TLCtransform— Sylvie Leotin (@sleotin) May 21, 2020
Ending racial disparities and helping our veterans. #TLCtransform There are many women veterans who get breast cancer.— swaggsheila (@swaggsheila1) May 21, 2020
10 words, no order:— Stephanie Graff, MD, FACP (@DrSGraff) May 21, 2020
Listen. Care. Change. Grow. Work. Ask. Advocate. Challenge. Lead. Learn. #TLCtransform
A3e— ????? ?????? ?.?, ?.??? (@jesusanampa) May 21, 2020
??Diversity & inclusion