Let's Define Value of Care June 2018 #gyncsm Chat

This month we discussed, for the first time, the topic Value of Care. We were pleased that Sarah Temkin, MD a gynecologic oncologist (VCU Massey Cancer Center) and co-author of the SGO article "The "Value" of value in gynecologic oncology practice in the United States: Society of Gynecologic Oncology evidence-based review and recommendations" joined us for this important discussion. 

We had a lively discussion with 46 participants and achieved 2.43 million impressions. You may find the complete transcript here and the analytics here. Resources mentioned during the chat may be found at the end of this post. 

Here is a sample of the responses we had to the questions we discussed. 

T1a: There been a lot of discussion in recent years about "value of care". Why is it important?

• T1a It’s important to remember that more expensive care does not always mean better care. Spending in the US which far exceeds that of other countries is not correlated with commensurate improvements in health outcomes (http://www.commonwealthfund.org/publications/issue-briefs/2015/oct/us-health-care-from-a-global-perspective)
• T1a #Healthcarevalue also means avoiding waste - estimated that 20% of healthcare spending is unnecessary care (eg. 2 doctors order the same test) Reducing waste could leave $ for better or more care elsewhere
• T1a. There’s a slow culture shift in cancer where it’s no longer just about “will drug X make me live longer” but “will drug X make me live better.” And how you the patient define “better” is your very own definition of “value” - how’s that for #PrecisionMedicine!

T1b: How do YOU define the "value of care" you give and/or receive as a patient, loved one, healthcare professional, etc?

• T1b the most “valuable care” to me personally is when the healthcare provider LISTENS
• And valuable care may mean eliminating therapy – #ASCO18 showed us that as many as 70% of patients with breast cancer don’t benefit (but do get toxicity) from chemotherapy
• My definition is improvement In Quality of life per cost of intervention
• T1b Net Health Benefit with clinical benefit, financial toxicity, long term survival, palliation of symptoms, Quality of life, treatment free interval
• "Value of care" has become increasingly significant as the rise of medical costs for treatments continue to rise. As a patient, I want the most effective treatment for the least cost.
• T1b. I value care in which the professional listens and does the best they can under the circumstances, even if things don't always work out.

T2: In addition to price, what other information would you need in order to make a judgment on the value of the care you receive (procedures/chemo/visits/etc.)? 

• T2 We often lose sight of toxicity and time away from family when prescribing care. If a chemotherapy regimen can be given monthly, but a weekly treatment is prescribed that is a lot of time spent traveling and getting care that could have been saved.
• T2 Opportunity costs. Effectivity. Side effects and medicines required to control them, months lost due to not using an effective drug. Quality of life. 
• A2: Value of care takes into consideration that patients will be treated well, with compassion and #empathy. Cost savings are irrelevant if I am not acknowledged as a human with goals for my life that may change how I want to pursue treatment
• Price wouldn’t be number one for me. It would be how can I make this easier on my loved ones.

T3: What are Quality-adjusted life years (QALY)? How do we measure outcomes? What elements are large medical organizations (incl. ASCO and SGO) including in their recommendations on value of care?

• QALY economic evaluation to assess the value for money of medical interventions. One QALY equates to one year in perfect health 
• Essentially years of life added due to cancer treatment but adjusted by functional status. Is it really worth extending life without living?
• just today I read an interesting review of QALY as a measure of healthcare outcome and cost...and the controversy over its use. recently published: https://jamanetwork.com/journals/jama/fullarticle/2682917
• @ASCO Value Framework assesses the relative value of cancer treatment regimens that have been studied in #clinicaltrials. This is a combination of clinical benefit, side effects, and improvement in patient symptoms or quality of life in the context of cost

T4: How are rising drug, immunotherapy and targeted therapy prices impacting the evaluation of which treatments are of value? How have rising drug costs impacted you?

• As a #healthcare provider, I spend more and more time on the phone with insurance companies trying to justify treatments that may be of benefit to an individual patient #NotValuable
• I cringe every time I read a study about maintenance immunotherapy or targeted therapy where the patient continues it every few weeks (for life) - none of those studies go into the out of pocket costs and consequences of indefinite treatment!
• The more recently approved deufs for Gyn cancers ar exorbitantly expensive as compared to older approves drugs. They may not me more effective.
• Sarah Kelly LCSW for CacerCare in NYC often hears from patients" I don't want to bankrupt my family" and "I can't afford to live "
• T4: for patients who I work with at a local county hospital, access to PARP inhibitors after ovarian cancer recurrence & the identification of an inherited BRCA mutation, can be challenging primarily due to cost when they are un/underinsured
• T4. For gyn #sarcoma patients, I think most get new treatments in clinical trials, but I'd love to hear more from them & the doctors who are treating them.
• T4 And oral chemotherapy drugs may have completely different out of pocket costs compared infused chemotherapy. They also don't always align with physician financial incentives. 

T5: What is being done to encourage including discussions around cost as part of the treatment plan? Are cost and financial toxicity discussions happening during office visits? Do payment models impact care?

• Creating a safe space with patients, and honest conversation is important: https://www.cancer.net/blog/2016-04/financial-toxicity-another-hurdle-cancer-treatment
• T5. It's not routine to focus on cost, but it isn't uncommon to discuss at some point. That doesn't come up immediately.
• in genetic counseling we actually (unfortunately) have a word for all the time we spend counseling patients on cost/insurance coverage/paperwork processes... Genesurance. Definitely cuts into our availability and limits working at the top of our scope
• As many of the newer drugs are oral, I often times hear from the pharmacist that the drug is too expensive and the patient can not afford it
• T5 Patients experiencing high out-of-pocket costs may reduce their spending on food and clothing, self-reduce their doses (stretch pills), avoid recommended procedures, and skip physician appointments to save money
• T5: $ discussions are so tough in onc bc we’re talking about cancer, a life-altering illness. How do you decide when a drug is not worth it? What I CAN do at this stage is make it ok to talk about co-pays & expenses in clinic - I ask my pts about their #financialtoxicity.

If you are a patient or caregiver you may continue this discussion on the Smart Patients Platform ( https://www.smartpatients.com/gyncsm ). 

We hope to see you next month on July 11, 2018 at 9pm ET when we discuss Hereditary versus Somatic Mutations.

Please continue to tag your tweets with #gyncsm with information and news important to our community. 

See you next month. 

Dee

Co-founder #gyncsm 

RESOURCES

Presidents Panel: Cancer costs and value
https://www.cancer.gov/news-events/cancer-currents-blog/2018/presidents-cancer-panel-drug-prices?cid=eb_govdel

@CancerDotNet :
Managing Care
https://www.cancer.net/navigating-cancer-care/managing-your-care/taking-charge-your-care
Making Decisions
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/making-decisions-about-cancer-treatment
Financial Toxicity
https://www.cancer.net/blog/2016-04/financial-toxicity-another-hurdle-cancer-treatment
Understanding Cost related to Cancer Care
https://www.cancer.net/blog/podcasts/understanding-costs-related-cancer-care

ASCO Value Framework
https://www.asco.org/practice-guidelines/cancer-care-initiatives/value-cancer-care
http://ascopubs.org/doi/abs/10.1200/JCO.2016.68.2518

Value: The Next Frontier in Cancer Care
 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4912371/

QALYs in 2018
https://jamanetwork.com/journals/jama/fullarticle/2682917

@sloan_kettering Abacus a drug pricing lab/tool
https://drugpricinglab.org/tools/drug-abacus/

@FacingOurRisk
 http://www.facingourrisk.org/get-involved/HBOC-community/BRCA-HBOC-blogs/FORCE/general/nccn-summit-explores-patient-perspectives-of-value-in-cancer-care/

@ascopost clinical benefits/cost of Car-T cell therapy
http://www.ascopost.com/issues/may-25-2018/weighing-the-cost-and-value-of-car-t-cell-therapy/?email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c

NCCN White Paper
https://www.nccn.org/jnccn/supplements/pdf/JN1407_2RePR_Nardi.pdf

What is value in healthcare? via #hcldr
https://www.nejm.org/doi/full/10.1056/NEJMp1011024?viewType=Print2010

Crowdfunding for Prostate Cancer and Breast Cancer
https://onlinelibrary.wiley.com/doi/abs/10.1111/bju.14408

How Should We Define Value in Cancer Care?
http://theoncologist.alphamedpress.org/content/15/suppl_1/1.long

Charges and costs aren’t the same thing
http://www.kevinmd.com/blog/2017/06/charges-costs-arent-thing.html

Spending on cancer drugs in the U.S. has doubled in the last five years, and will double again
https://www.statnews.com/pharmalot/2018/05/24/cancer-drugs-spending-prices/

How do Patients Define Value in Cancer Care
https://www.huffingtonpost.com/kim-thiboldeaux/how-do-patients-define-va_b_7939662.html

June 13, 2018 Let's Define Value of Care

Over the past few years there have been many discussions and articles written on the value of different health care treatments, technologies and protocols. As we see amazing developments in targeted therapies, we see rising costs for those same cancer treatments. Spending on cancer treatments has doubled in five years. We talk in "QALY" Quality-adjusted life years. We hear of financial toxicity. How do we measure outcomes to determine which treatment is of value? We have had these type of discussions online and around our dining room tables. Other online communities such as the #hlcldr community have had this discussion (https://hcldr.wordpress.com/2016/01/03/value-in-healthcare/). Organizations such as NCCN, ASCO and SGO have presented their recommendations for finding value of cancer care.

This month we will be discussing Value of Care with special guest, Sarah Temkin, MD (@temkins). Dr Temkin is a co-author of the article "The "Value" of value in gynecologic oncology practice in the United States: Society of Gynecologic Oncology evidence-based review and recommendations". You may read the article at
https://www.sgo.org/wp-content/uploads/2012/09/Final-PDF_Value_Article.pdf

Our Chat will be guided by these questions:

T1a: There been a lot of discussion in recent years about "value of care". Why is it important?
T1b: How do YOU define the "value of care" you give and/or receive as a patient, loved one, healthcare professional, etc?

T2: In addition to price, what other information would you need in order to make a judgment on the value of the care you receive (procedures/chemo/visits/etc.)?

T3: What are Quality-adjusted life years (QALY)? How do we measure outcomes? What elements are large medical organizations (incl. ASCO and SGO) including in their recommendations on value of care?

T4: How are rising drug, immunotherapy and targeted therapy prices impacting the evaluation of which treatments are of value? How have rising drug costs impacted you?

T5: What is being done to encourage including discussions around cost as part of the treatment plan? Are cost and financial toxicity discussions happening during office visits? Do payment models impact care?


Dee
#gyncsm co-founder

Let's Talk - Patient / Physician Communication Feb 7, 2018

We know that communication plays an important role in the relationship patients have with their health care providers. During this month's #gyncsm chat, Let's Talk - Patient / Physician Communication, we discussed how communication has changed over the past few years, how you describe "good communication" and we finished the chat discussing the new ASCO Patient-Clinician Communication Guideline. We were pleased to have ASCO (@ASCO) and Timothy Gilligan (@TimGilliganMD) Cleveland Clinic, join us for this very important chat. We had 38 participants and 2.5 M impressions during the one hour chat. You may find the more analytics here and the complete transcript here.

Some sample responses to our questions appear below. Please see the transcript for more tweets.

T1: What shifts over time have you seen in communication between patients and physicians? What seems better? What seems worse?

• Shared decision making is for the better for all! 
• From a Docs POV, patients are more knowledgeable and engaged in their disease and how they’d like to treat it. Sometimes Dr Google can give patients misperceptions
• I worry about impact of EMR. Is there eye contact with physicians or are they they staring at the computer screen?
• there has been a shift away from paternalism (i.e. not telling a patient that they had cancer because it would be "upsetting") =good for openness. Flip side, demands from behind the scenes (billing, charting) can cause distraction & less attention during appointments

T2: What does "good communication" between patient and physician look like for you?

• Good communication requires listening and the Take 5 rule. Take at least 5 minutes to listen, 5 to comprehend/consider, & 5 to respond.
• T2: (I'm not a physician) but in my interactions with patients & families, "good communication" looks like a "normal" conversation that you might have w/ a friend: mutual info seeking+info giving+ reflecting on goals and purpose behind decisions and choices.
• Listen, look & feel with compassion & understanding. Take your eyes off the computer screen
• T2:@alihaider99  presents at @ASCO  study Results: Large majority of patients, 72%, preferred face-to-face interactions. Physicians who communicated face-to-face were perceived to be more compassionate, professional, and better communicators.
• I find the listening, curiosity, empathy and a willingness to work collaboratively are key. Plus sincere interest in the person 

T3: What do you wish more doctors would do when it comes to communication? / What do you wish more patients would do when it comes to communication?

• I know for myself that I can spend more time preparing questions and other things to get the most out of the appointment.
• Again, from the psych perspective, I hear patients talk about wanting respect. I hear physicians talking about pressure to be infallible. 
• Doctors: Please look me in the eye, and do not be afraid to admit you do not know the answer to my question.
• Be honest transparent respectful and just have a conversation. It’s that easy.
• One of our leaders challenged us to say "I don't know" more often. Wise advice

T4: What prompted @ASCO to produce the communication guideline as part of itsSupportive Care and Treatment Related Issues guidelines? What are the key points?

• T4: Improved communication has been associated with improvements in several health outcomes, and patient-physician communication was identified as a high-priority topic by our Supportive Care Guidelines Advisory Panel
• T4: The guideline includes recommendations for clinician training in communication skills; facilitating family involvement in care; and discussing goals of care and prognosis, treatment selection, and end-of-life care
• T4: The guidelines also remind me how much cancer docs have to cover and how complex each area is on its own. Was good to see communication training mentioned as well.
• Communication, while intuitive in care, is often difficult to do effectively. Most orgs should promote guidance for effectively communicating. @ASCO took the bull by the horns & its a good thing

T5: Why was it important to include family involvement as part of the Patient-Clinician Communication guideline?

• T5: From my perspective as an oncologist, family and other loved ones are key to getting through cancer treatments.
• T5: Most people don't make decisions in a vacuum but in the context of their relationships.
• So important. So so important. Patients make decisions with support of caregivers, who can often provide some clarity in the chaos of diagnosis
• Cancer care is a family affair.
• Most patients discuss treatment with family and often rely on family to get to treatment and help manage side effects

T6: Hope and empathy are incorporated into the Patient-Clinician Communication guideline. What is it important for patients and physicians to consider when it comes to these concepts?

• T6: For me, empathy is the beginning, middle and end of good patient connection. If empathy is present, even the hardest conversations can happen.
• T6: Kindness and empathy can help diffuse negative emotions associated with cancer diagnosis/treatment, and may even help to improve patients’ outcomes
• T6 If we're talking about #precisionmedicine, and let's face it, we should be; empathy and hope are vital to the communication plan, to the wholeness approach to tx
• T6: I think that hope is trickier. In some cases, the hope is for the best quality of life, not for cure or survival. Communicating the nature of hope matters.

T7: How can both patients and physicians prepare for visits and lay the groundwork for good communication? What have you found helpful to get answers and keep everyone informed and connected between visits?

• T7: @l_schapira wrote a great blog post on @CancerDotNet about how patients and physicians can work together to make great communication happen https://t.co/8AmEy3gfVm
• T7 It's always good to have questions pre-written before an appt. Have a care journal to jot down things of concern to be later discussed. 
• T7: And @CancerDotNet has great tips for patients to talk to their care team, including specific questions to ask about 200+ types of cancer https://t.co/KAm3AxrBUf
• Here are five steps to guide you in becoming a partner with your doctor in determining and guiding your #cancer treatment. #gyncsm #PatientEngagement https://t.co/1oqXq6GScw
• T7: physicians can directly encourage open communication & questions. They lay groundwork by being authentic, present. 
• T7: make lists. frame your symptoms. engage in relationship-building. more in #TalkingToYourDoctor https://t.co/ekNJREQ6T1

Please scroll down to find resources shared during this chat.

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm

Join us next month on our regular day (second Wednesday of the month) Wednesday, March 14, 2018 at 9pm ET as we discuss Immunotherapy with guest Dr Christian Hinrichs.
Have a good month, 

Dee
#gyncsm Co-founder
RESOURCES

• ASCO  Patient Clinician Guideline https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues#/27581
• Patient-physician communication: an important contributor to cancer care https://www.youtube.com/watch?v=U_o9ryKYbAs&feature=youtu.be
• 2017 ASCO Palliative Care: Patients With Advanced Cancer Prefer Oncologists Not Use Computers in the Exam Room http://www.ascopost.com/News/58179 study by @alihaider99
• Being Mortal | Watch S33 E6 | FRONTLINE | PBS | Official Site  https://www.pbs.org/wgbh/frontline/film/being-mortal/
• Role of Kindness in Cancer Care http://ascopubs.org/doi/abs/10.1200/JOP.2017.026195
• Communication is Teamwork https://www.cancer.net/blog/2016-01/communication-teamwork
• Taking Charge of Your Care https://www.cancer.net/navigating-cancer-care/managing-your-care/taking-charge-your-care
• Cancer Treatment Decisions https://www.kxly.com/lifestyle/health/cancer-treatment-decisions-5-steps-to-help-you-decide/690498083
• @theNCI Patient version Communication in Cancer Care  https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/communication-pdq
• Talking to your Doctor https://www.amazon.com/Talking-Your-Doctor-Patients-Communication-ebook/dp/B00E72RT56/ref=la_B004W7A1LU_1_1?s=books&ie=UTF8&qid=1516652534&sr=1-1

February 7, 2018 Chat : Let's Talk- Patient / Physician Communication

An important part of the patient-physician relationship is communication. This month we are holding our chat a week early on Wednesday, February 7, 2018 (9pm ET | 8pm CT | 6pm PT) and our February topic is Let's Talk - Patient / Physician Communication. 

Evidence shows that better communication of health care information leads to better outcomes for patients in a number of different ways. We also know that communication related to cancer has its own set of challenges. Patients have said that hearing the words, "You have cancer", impacts them in a way in which they don't hear what their physician says next. Patients are processing those words and experiencing many different emotions. Oncologists while sharing a cancer diagnosis with a patient and their family are also challenged to provide not only scientific information but support. At diagnosis, while discussing treatments, in addressing survivorship issues and end of life care, communication is a key part of the patient and clinician relationship.

Recently, ASCO (The American Society of Clinical Oncology) took on the task of developing the Patient Communication:ASCO Consensus Guideline. An expert panel was assembled to answer the question, What communication skills and tasks can clinicians use to optimize the patient-clinician relationship, patient and clinician well-being and family well-being?. We are pleased to be joined this month by Timothy Gilligan, MD (@TimGilliganMD) Co-chair of the ASCO panel and Kari Bohlke (@karibohlke), ASCO staff member to discuss the Guideline and cancer-care communications.

Below are the questions we will ask during our chat:

T1: What shifts over time have you seen in communication between patients and physicians? What seems better? What seems worse?

T2: What does "good communication" between patient and physician look like for you?

T3: What do you wish more doctors would do when it comes to communication? / What do you wish more patients would do when it comes to communication?

T4: What prompted @ASCO to produce the communication guideline as part of its Supportive Care and Treatment Related Issues guidelines? What are the key points?

T5: Why was it important to include family involvement as part of the Patient-Clinician Communication guideline?

T6: Hope and empathy are incorporated into the Patient-Clinician Communication guideline. What is it important for patients and physicians to consider when it comes to these concepts?

T7: How can both patients and physicians prepare for visits and lay the groundwork for good communication? What have you found helpful to get answers and keep everyone informed and connected between visits? 

Our recommended readings for this chat are the ASCO Guideline which can be found at:
http://ascopubs.org/doi/full/10.1200/JCO.2017.75.2311
and the American Cancer Society page The Doctor Patient Relationship:
https://www.cancer.org/treatment/understanding-your-diagnosis/talking-about-cancer/the-doctor-patient-relationship.html

We look forward to having you join us on February 7th for this very important discussion.

Dee and Christina
#gyncsm Co-founders

What's on your Mind? #gyncsm Open Mic Night

This month we are opening the discussion to topics our participants want to discuss.

What is on your mind?

Are you considering a PARP and want to know more? 
Are you interesting in taking part in a clinical trial but have questions? 
Do you want to know if others are experiencing Quality of Life (QOL) issues like you are?
Do you have questions about seeing a Genetic Counselor for genetic testing?  
Do you want to discuss the results of the Our Way Forward Survey? 
Do you want to discuss how to communicate with your health care team?
Did you see the latest research on obesity and ovarian cancer and wonder if it applies to you? 
If you are a health care provider, do you wonder how much information your patient wants to hear about their condition?

Join us on July 12th at 9pmET | 8pmCT | 6pmPT and bring your thoughts, questions and comments for our third "Open Mic" #gyncsm session.


Dee
Co-Founder #gyncsm Chat

November 9,2016 Your Health Care Team

Tonight we talked about the health care professionals and allied health professionals who are part of the team involved in the care of women diagnosed with a gynecologic cancer.

We were pleased to have 26 participants join in the discussion. Additional analytics may be found here. And the complete transcript here. 

Here is a quick overview of the topic questions and responses:

T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?

• Consider post-Cancer experts you may need (ex. fertility), & recognize team members aren't all physicians (nurse navigators)
• my team is everyone who has helped me get through dx, treatment and now survivorship
• You have 2 be able 2 effectively communicate w/ your care team; these shouldn't be people you meet once & trust 4 optimal outcome

T2: Which professionals do you include in your health care team? What are some important roles to fill?

Professionals mentioned include: 

medical oncologist

gynecologic oncologist

radiation oncologist

radiologist

nutritionist

genetic counselor

social worker 

financial counselor

therapist

pharmacist

nurse (clinical trial, adv practice, treatment)

primary care physician

mental health support

gyn-urologist

Non-professionals

those who help with insurance , bills, transportation etc

patient groups

T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 

radiologists

pelvic floor physical therapist

medical librarian 

pharmacist

health coach

nutritionist 

palliative care specialist

T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?

•  T4 The role is coming more to forefront, care plan are being developed specifically for post-treatment for radonc profs
• Historically, while they may be part of care team, radonc was not weighted in the "patient engagement" strategy. That's changing

T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 

• RNs have a huge role in connecting the dots behind the scenes & caring in clinics 
• Listening skills and documentation competency!
• Nurses are also the front line when discussing issues of fertility and sexuality

T6: How do you handle communication and coordination between the members of your health care team?

• I think, unfortunately, that there is still a need for patients to have their own documentation to facilitate communication
• Patient is center of care team. Share concerns & ask questions. Improves communication & satisfaction.
• ask your clinic what options are available: phone calls, texts, secure/HIPAA compliant email, telemedicine might be available
• Sometimes I think the wisest course is to assume no one has heard anything from anyone else on the team, no matter how vital 

Resources: 

On Your Side: The Gynecologic Cancer Care Team via @SGO_org
https://www.sgo.org/patients-caregivers-survivors/gynecologic-oncology-video/

Your cancer treatment team via @cancer_connect
http://news.cancerconnect.com/newly-diagnosed/your-cancer-treatment-team/

The Oncology Team via @CancerDotNet
http://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/oncology-team

Board Certified Pharmacists as Team members
https://www.youtube.com/watch?v=GCJyQtgruXQ&feature=youtu.be

List of team members via @CancerCare
http://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning

National Society of Genetic Counselors
http://www.nsgc.org/

The must-have binder: my key to being an organized patient (or caregiver)
http://lisabadams.com/2011/03/16/the-binder-what-every-patient-should-have/

The next #gyncsm chat is Wednesday, December 14th at 9pmET. The topic is Getting Involved in Research.   

Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.

See you next month. 

Dee 

Co-founder #gyncsm