Making Shared Decision Making Standard Practice in Health Care Harlan M. Krumholz @hmkyale @PCORI #PCORI2017
Shared Decision Making What exactly is shared about it?
Assertion Health care professionals seek the best for their patients.
Assumptions People expect to be told what to do.
Assumptions People expect to be shielded from information.
Assumptions People expect to defer to authority.
What Needs to Change Culture Structure Incentives
What Needs to Change Assumptions
Your Data Data Access
Access to your own data …
Because … It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s yours It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you It’s about you Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high Stakes are high
Because … Transparency Accountability Accuracy Usability Power
Patient Rights Accessing and obtaining copies of one’s health information for one’s own purpose is a right, not a privilege, which is fundamental to your ability to participate in our health care system. https://www.healthit.gov/sites/default/files/2016_report_to_congress_on_healthit_progress.pdf
Patient Rights The right extends to a broad array of information (e.g. lab results, images, prescriptions, notes), as well as to data holders (i.e. doctors, hospitals, health plans and providers) https://www.healthit.gov/sites/default/files 2016_report_to_congress_on_healthit_progress.pdf
Patient Rights Per-page charges do not apply when the individual is requesting a copy of information maintained electronically. https://www.healthit.gov/sites/default/files/2016_report_to_congress_on_healthit_progress.pdf
New Assumption People have a right to their data.
Your Choices Permission and Knowledge
https://andrei-lupu.com/team-work/the-art-of-assumption-making/
Permission Do I have permission to choose?
Knowledge Do I have knowledge I need?
New Assumption People have a right to decide and to the relevant information.
What Else Needs to Change Information
Information Absence It is what is missing that is the problem.
Problem Scientific enterprise cannot keep pace with the information needs of people and patients.
Power to Generate Data Together Knowledge is generated in everyday practice. Each person is better for the contributions of the person ahead of them – and helping the people who follow. And the studies more relevant, efficient, and impactful for their participatory nature.
New Assumption People have a right to participate actively in research – and research will be faster, better, and cheaper because of it.
Need for Action We are not waiting …
And … You are not alone. You are not unreasonable. You are not too annoying, bothersome, irritating …
And … You are bringing much-needed change.
Key Collective action
Collective Action Access to data Control over decisions Participation in research
What Needs to Change Culture Structure Incentives
To make progress … See through the eyes of patients. Feel through the hearts of patients. Make it better for the next person.
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