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
