National Cancer Patient Forum: "What might we be overlooking?" (A patient's perspective)
•
1 like•806 views
The document discusses issues with the current healthcare system from the perspective of patients, including a risk of selection bias in only considering the views of certain patients and not hearing from those who have dropped out of the system. It advocates for asking patients directly if the system is working and ensuring information reaches those in need. The need to fix problems where information isn't reaching patients at the point of need is also discussed.
Recommended
More Related Content
Similar to National Cancer Patient Forum: "What might we be overlooking?" (A patient's perspective)
Similar to National Cancer Patient Forum: "What might we be overlooking?" (A patient's perspective) (20)
More from e-Patient Dave deBronkart
More from e-Patient Dave deBronkart (20)
Recently uploaded
Recently uploaded (20)
National Cancer Patient Forum: "What might we be overlooking?" (A patient's perspective)
- 1. e-Patient Dave epatientdave.com © 2017 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com A patient perspective: What might we be overlooking? A risk of selection bias in our view of the field
- 2. e-Patient Dave epatientdave.com APCDs won’t include people who’ve given up or fallen out of the system
- 6. e-Patient Dave epatientdave.com Go to GroundTruth
- 7. e-Patient Dave epatientdave.com “Who gets to say what outcome should be valued?”
- 8. e-Patient Dave epatientdave.com “What are your goals for your care?”
- 9. e-Patient Dave epatientdave.com “Taxonomy of burden”
- 10. e-Patient Dave epatientdave.com “Taxonomy of burden”
- 13. e-Patient Dave epatientdave.com Asking the experts • Kym Martin @KymLMartin – Hodgkins (1983), melanoma (1992), melanoma (2004), breast cancer (2012)
- 14. e-Patient Dave epatientdave.com Asking the experts • Kym Martin @KymLMartin – Hodgkins (1983), melanoma (1992), melanoma (2004), breast cancer (2012) • Alicia Staley @Stales – Hodgkins; breast cancer x2
- 15. Best Care at Lower Cost (IOM 2012)
- 16. How it actually unfolds:
- 17. How it actually unfolds:
- 18. How it actually unfolds:
- 19. This is SO not okay. It’s a PROBLEM.
- 21. It’s like “amenable mortality” A finding that doesn’t reach the point of need is precisely like a medication with an ineffective vehicle: fruitless. This IS a problem to the ultimate stakeholder and THIS GROUP needs to declare it and mandate that it get fixed.
- 22. e-Patient Dave epatientdave.com What I want you to remember from today:
- 23. “This is a PROBLEM. We must END it.”
- 24. e-Patient Dave epatientdave.com Next: Whom should we ASK “Is it working?”
- 25. Institute of Medicine – Sept 2012 Major new report:“Best Care at Lower Cost”
- 26. Institute of Medicine – Sept 2012 Major new report:“Best Care at Lower Cost”
- 27. Best Care at Lower Cost says e-patients are an essential part of tomorrow’s healthcare. Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
- 28. e-Patient Dave epatientdave.com What I want you to remember from today, #2:
- 29. e-Patient Dave epatientdave.com Patients & caregivers are the ultimate stakeholder. Give them veto-level approval power.
- 30. e-Patient Dave epatientdave.com Analogous inhibitor: Financial toxicity
- 33. e-Patient Dave epatientdave.com “We perform better when we’re informed better”
- 34. e-Patient Dave epatientdave.com Corollary: “It’s perverse to keep us in the dark and then call us naïve”
- 36. e-Patient Dave epatientdave.com What happens when a consumer tries to be responsible about costs?
- 37. e-Patient Dave epatientdave.com N.H. insurance shopping, 2011 Premium Deductible Co-pay after deductible Max OOP (deductible + co-pay) Stop-loss max (in-network + out) Option A $894 Option B $705 Option C $581 Option D $495 Option H $624
- 38. e-Patient Dave epatientdave.com The choices they offered Premium Deductible Co-pay after deductible Max OOP (deductible + co-pay) Stop-loss max (in-network + out) Option A $894 $1,000 Option B $705 $2,500 Option C $581 $5,000 Option D $495 $10,000 Option H $624 $5,950
- 39. e-Patient Dave epatientdave.com The choices they offered Premium Deductible Co-pay after deductible Max OOP (deductible + co-pay) Stop-loss max (in-network + out) Option A $894 $1,000 20% Option B $705 $2,500 20% Option C $581 $5,000 20% Option D $495 $10,000 0% Option H $624 $5,950 0%
- 40. e-Patient Dave epatientdave.com The choices they offered Premium Deductible Co-pay after deductible Max OOP (deductible + co-pay) Stop-loss max (in-network + out) Option A $894 $1,000 20% $3,500 $12,500 Option B $705 $2,500 20% $5,000 $12,500 Option C $581 $5,000 20% $7,500 $12,500 Option D $495 $10,000 0% $10,000 n/a Option H $624 $5,950 0% $5,950 $12,500
- 41. e-Patient Dave epatientdave.com I know – run some scenarios!
- 43. e-Patient Dave epatientdave.com I know – graph it!
- 44. e-Patient Dave epatientdave.com My favorite complaint:
- 45. e-Patient Dave epatientdave.com “Patients are the only ones who don’t have any skin in the game” - Practice manager, quoted in Health Leaders, Fall 2011
- 46. e-Patient Dave epatientdave.com 2011: EOB for a scan
- 47. e-Patient Dave epatientdave.com Speaking of skin in the game…
- 49. e-Patient Dave epatientdave.com Doing what empowered buyers do dave.pt/skincancerRFP
- 51. e-Patient Dave epatientdave.com Obstacle to adoption: “My patients aren’t asking for this.”
- 54. e-Patient Dave epatientdave.com © 2017 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com A patient perspective: What might we be overlooking? A risk of selection bias in our view of the field
- 55. e-Patient Dave epatientdave.com Ask the people who have the problem “Is it working?”
- 56. e-Patient Dave epatientdave.com And PLEASE – fix the leaks in dissemination to point of need.