Aligning Incentives for Patient Engagement: Enabling Widespread Implementation of Shared Decision Making
May 23, 2013
Karen Sepucha, Massachusetts General Hospital
Dale Collins Vidal, The Dartmouth Institute for Health Policy & Clinical Practice
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Decision Quality Measurement
1. D e c i s i o n Q u a l i t y M e a s u r e m e n t
Aligning Incentives for Patient
Engagement
May 23, 2013
2. Measuring and Improving
Decision Quality
Karen Sepucha, PhD
Health Decision Science Center
Massachusetts General Hospital
ksepucha@partners.org
http://www.massgeneral.org/decisionsciences/
3. Measuring Decision Quality in
Clinical Practice
Dale Collins Vidal, MD
Section Chief, Plastic Surgery, DHMC
Professor of Surgery, Dartmouth Medical School
Director of the Center for Informed Choice, TDI
4. 36 years old female
Presented with sore on right breast
Referred for biopsy
Diagnosis:
Invasive Breast Cancer
Meet Amy
8. • Sometimes, there is no “right” choice
• When there is a single best option,
doctors may not be aware of it
• Or worse, they may know the best
choice, but fail to act on it
Fragmented care of the past…
9. Comprehensive
Breast Program
Surg. Oncology
Med. Oncology
Radiation Onc.
Radiology
Pathology
Plastic Surgery
Familial Cancer
Program
Physical Therapy
Clinical Trials
Palliative Care
…replaced by coordinated care
14. Discussion
• In 1993, an NIH consensus panel
recommended that breast
conservation would be the preferred
treatment for most women with early
breast cancer
• What is the right rate for breast
conserving surgery in the setting of
early stage breast cancer?
15. Discussion
• In situations where there is no single
best option and/or the evidence is
uncertain, how should we inform
patients about their options?
16.
17. Slides courtesy of Nan Cochran
“The risk of a side effect
from this medication is…”
Qualitative
Term
Your Estimate of the
probability
Rare
Unlikely
Probable
Very Likely
18. High Quality Decision require
Adequate Knowledge
Values clarification
Values-Choice
Concordance
Sepucha, Fowler, Mulley.
Policy Support For Patient-
Centered Care: The Need For
Measurable Improvements In
Decision Quality,
Health Affairs 2004
19. Former Intake Process for Patients Newly
Diagnosed with Breast Cancer
Biopsy
reveals
invasive
cancer
Patient
proceeds to
appt. with
surgical
oncologist
Radiologist
informs patient
of diagnosis
Coordinator
schedules appt.
with surgical
oncologist
20. Biopsy
reveals
invasive
cancer
Patient view
DA prior to
appt. with
surgeon
Radiologist
informs patient
of diagnosis
Coordinator
schedules 2
appts: CSDM &
surgery
Current Intake Process for Patients Newly
Diagnosed with Breast Cancer
24. 2.3
2.5
2.2
2.2
4.3
4.2
3.9
4.6
1-A Little
Important
2 3 4 5-Very
Important
Reasons to choose Lumpectomy
Breast is saved
No prosthesis
Recurrence rate
Summary score
Reasons to choose Mastectomy
May take less time
Peace of mind
Recurrence rate
Summary score
2.7
2.9
3.2
2.9
3.8
4.2
4.5
4.2
1-A Little
Important
2 3 4 5-Very
Important
Reasons to choose Lumpectomy
Breast is saved
No prosthesis
Recurrence rate
Summary score
Reasons to choose Mastectomy
May take less time
Peace of mind
Recurrence rate
Summary score
Lumpectomy
Choice
Mastectomy
Choice
Values for Possible Outcomes
Compared to Treatment Choice
65%
35%
25. Logistic regression of value scores as
predictors of surgical treatment choice.
Collins E D et al. JCO 2009;27:519-525
26. 70
75
80
85
90
95
100
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
PercentBCS
Which rate is right? 70%? Or 95%?
Rates of Breast Conservation
at a major academic medical center
28. Health Care Decisions
are Complicated
…and decision quality is an important
dimension of care if we want to insure
that patients are getting the care they
need and would choose when fully
informed.
30. The clinical encounter may be further
complicated by the emotional distress
associated with a recent diagnosis or
underlying disease
The push for increased clinical
efficiency and clinical documentation is
driving shorter and shorter
interactions….
At the same time, we must evaluate and
inform patients about increasingly
complex options – often in situations
where the evidence may lacking or
inadequate.
Clinical Barriers
31. Discussion
• How can shared decision making
optimize the value equation?
Value = Quality/Cost
32. 36 years old female
Presented with sore on right breast
Referred for biopsy
36 year single special educator
Invasive Breast Cancer
Remember Amy?
33. Take Aways
• Why is health care delivery so
complicated?
• What is it about health care decisions
that make them so complicated?
• What does it take to redesign delivery
systems to support high value, patient
centered care?
• How can we embed change into practice?
35. • Jack Wennberg
• Jim Kim, Jim Weinstein
• Al Mulley, K. Sepucha
• Hilary Llewellyn-Thomas
• Annette O’Connor
• Allison Hawke, Caroline Moore,
Kate Clay, Stephen Kearing,
• Sue Berg, Ashley Harris,
Sherry Thornburg
• Lisa Weiss, DCS
• FIMDM, Health Dialog
Acknowledgments
36. Agenda
What is a good decision?
How to measure “decision quality”?
Knowledge
Matching treatment to goals
How might the survey be used?
37. Case study: Mr. M’s Story
71yo man referred to orthopedics, worsening
right hip pain over past 2 years, x-rays confirm
damage
Orthopedic surgeon’s note: “I went over in some
detail different treatment options. He very much
wishes to proceed with right total hip
replacement.”
Talked with family and friends, saw PCP for pre-
op evaluation
37
39. High quality, patient-centered care
NQFNational Quality Forum
Core Themes:
fully informed
treatments reflect
patients’ want, needs
and preferences
play a key role in
making healthcare
decisions
40. Agenda
What is a good decision?
How to measure “decision quality”?
Knowledge
Matching treatment to goals
How might the survey be used?
41. Measuring Decision Quality
To provide evidence that
- The patient understands key
facts.
-The treatment received is
consistent with the patient’s
personal goals.
-The patient was meaningfully
involved in decision making
Sepucha et al. 2004 Health Affairs; Elwyn BMJ 2006
42. “they didn’t say to me, “Well, we could
remove the breast, we could do
this, we could do that.” They just
said, “This is what we’re going to do.”
And that was it—I wasn’t in on the
decision.”
“I made the decision. I’m very happy with
the lumpectomy because that’s what I
wanted to do from the beginning. They
[my doctors] didn’t disagree. They didn’t
agree. They just said, “Okay.” They
understood.”
“She[the doc] was compassionate, …
[and] gave me the data that I needed ...
We talked statistics and sizes and
measurements and things that helped
me..with my decision.”
Who made the decision about
treatment of your breast cancer?
Mainly the doctor
Both equally
Mainly you
X
43. Survey development process
ITEM GENERATION
Literature review
Focus groups and
interviews
Candidate facts and
goals
Patient and provider
importance ratings
(~n=20)
DRAFT INSTRUMENT
• Draft items
• Cognitive
interviews (~n=5)
• Medical and literacy
review
• Field testing
FINAL INSTRUMENT
• Formal
evaluation, large,
diverse samples
• Benchmarks and
standards for
reporting
44. Field tests for many decisions
Surgical decisions (n=1,221)
Breast cancer surgery (n=237, n=445) and Reconstruction (n=84)
Knee and hip osteoarthritis (n=382; n=127)
Herniated disc (n=183)
Cancer screening (n=338)
Colon cancer screening (n=338)
Medication decisions (n=1,243)
Menopause (n=401)
Depression (n=404)
Breast cancer systemic therapy (n=358)
Underserved populations (n=289)
Colon cancer screening, African American (n=191)
Breast surgery Spanish language, Hispanic (n=98)
47. Do patients get treatments that match their
goals?
Had
Surgery
Had non surgical
treatment
Goals suggest
Surgery
Goals suggest
Non surgical
47Source: Sepucha K et al. Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation. BMC
Musculoskelet Disord 2011 Jul 5;12(1):149.
Overuse
Underuse
48. Do patients get treatments that match their
goals? (n=383)
Had
Surgery
Had non surgical
treatment
Goals suggest
Surgery
50% 25%
Goals suggest
Non surgical
12% 14%
48Source: Sepucha K et al. Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation. BMC
Musculoskelet Disord 2011 Jul 5;12(1):149.
49. Is there a “Decision Quality” score?
Informed and receive treatments that match their
goals
31% of respondents met cutoff for knowledge and had
treatment that matched their goals
Site (using decision aids), involvement score, and
having had surgery were associated with higher DQ
Linked to less regret and more confidence
50. Agenda
What is a good decision?
How to measure “decision quality”?
Knowledge
Matching treatment to goals
How might the survey be used?
51. What’s the purpose of measurement?
Research
BasicTranslClinical
Accountability
Performance
measured and
compared
Clinical practice
Care is implemented in
various settings
Benchmarks
Cost/Feasible
Risk adjustment
Actionable
Feasible
Acceptable
Detailed
Theory
Controlled
52. Partners ACO: care improvement tactics
52
Longitudinal Care Episodic Care
Primary Care Specialty Care Hospital Care
Access to care
Patient portal/physician portal Access program
Extended hours/same day appointments Reduced low acuity
admissions
Expand virtual visit options
Design of care
Defined process standards in priority conditions
(multidisciplinary teams)
High risk care
management
Shared decision
making
Re-admissions
Hospital Acquired
Conditions
100% preventive
services
Appropriateness Hand-off and
continuity programs
Chronic condition management
EHR with decision support and order entry
Measurement
Incentive programs
Variance reporting/performance dashboards
Quality metrics: clinical outcomes, satisfaction
Costs/population Costs/episode
Milford, CE, Ferris TG (2012 Aug). A modified “golden rule” for health care organizations. Mayo Clin Proc. 87(8):717-720.
54. Mr. M’s story, continued
2 years later, pain worsened and night time
pain came back
Went back to surgeon and had replacement
surgery
Good relief of pain, good function, no regrets
55. Summary
Well-tested decision quality survey instruments
exist for common topics
Download from
(www.massgeneral.org/decisionsciences/ )
Provide accountability that we have reached
right patient, right treatment, right time
Hinweis der Redaktion
Brief Biography: Dale Collins Vidal, MD, MS is Director of the Center for Informed Choice at The Dartmouth Institute for Health Policy and Clinical Practice, Professor of Surgery and Chief of Plastic Surgery at DHMC. As a leader in healthcare transparency and shared decision-making, Dr. Vidal’s research efforts and expertise involve patients’ medical decision makingand the use of health information technology systems to promote patient-centered care. She is actively engaged in a number of activities in support of shared decision making in health care delivery and health care policy reform. She has served as a member of the Agency for Healthcare Research and Quality (AHRQ) Technical Expert Panel on Formative Research to Inform the Development of Preventive Services Tools Based on USPSTF Recommendations for Clinicians and Consumers to improve health care quality.
53 steps, 16 different microsystems between 10/27 and 1/15Has 5 more weeks of chemo before surgeryWill enter plastic surgery, general surgery, and radiation oncology in the up coming weeks before her operation
53 steps, 16 different microsystems between 10/27 and 1/15Has 5 more weeks of chemo before surgeryWill enter plastic surgery, general surgery, and radiation oncology in the up coming weeks before her operation
The Comprehensive Breast Program originally existed as a core staff of a medical director, program assistants (secretaries who handled all new referrals, including triage, scheduling, and gathering all necessary outside records), and breast care coordinators (specially trained social workers who met with patients at the time of their diagnosis, provided them educational materials and support, and were available for short term counseling and referrals to supportive services. The core team was housed in a single location, not a typical patient area though patients were welcome to come to browse the library or seek other information. The broader team included all the staff and providers in various departments who interacted with and treated breast cancer patients. The purpose of the CBP was to coordinate initial appointments for patients and gather outside records for the providers who would be seeing the patients. Subsequent appointments were made by individual departments.
DQ measures for use in individual patient care Two patients Research study Patient exampleDQ measures for assessment of program or provider performance Dashboard P4P paperBrief Biography: Dale Collins Vidal, MD, MS is Director of the Center for Informed Choice at The Dartmouth Institute for Health Policy and Clinical Practice, Professor of Surgery and Chief of Plastic Surgery at DHMC. As a leader in healthcare transparency and shared decision-making, Dr. Vidal’s research efforts and expertise involve patients’ medical decision makingand the use of health information technology systems to promote patient-centered care. She is actively engaged in a number of activities in support of shared decision making in health care delivery and health care policy reform. She has served as a member of the Agency for Healthcare Research and Quality (AHRQ) Technical Expert Panel on Formative Research to Inform the Development of Preventive Services Tools Based on USPSTF Recommendations for Clinicians and Consumers to improve health care quality.
Roemer’s law- a bed built is a bed filled. Field of dreams. I believe that Jack Wennberg is also credited with helping us to categorize health interventions into two broad categories. The first is “effective care” where the benefits are large compared to harms. However, studies have revealed that the current informed consent process, in most cases, fails to help patients understand specific risks and benefits of treatment options.2 Often the choice between competing treatment options requires “preference-sensitive” decisions. In these situations, the treatments may not be supported by adequate evidence or they involve trade-offs that can variably affect a patient’s quality of life. Ideally the treatment choice would take into account an individual’s values and preferences regarding the potential outcomes leading to an informed choice. In contrast, “effective care” is supported by strong evidence and those decisions are less dependent on an individual’s personal values and preferences. In cases where effective care is indicated, a recommendation for treatment may be more appropriate, along with a discussion of the potential benefits and harms with the decision maker. This approach is more in keeping with the traditional model of informed consent. An ideal system would take this process a step further and ensure that decision makers are adequately informedEffective care: underusedEvidence-based care that all with need should receiveBenefits are large compared to harmsUsual goal is to increase uptakeExamples: Treatment - abx for CAPScreening - pap smearPrevention – flu shotSupply-sensitive care: overusedVisits, hospitalizations, ICU admissions and other services where utilization is associated with supply of resourcesPreference-sensitive care: misusedTreatment choices with multiple options; involves tradeoffs, scientific evidence re: outcomes is variableBenefits/harms are uncertain or dependent upon patient valuesGoal is patient participation & high decision qualityPrevents overuse of options patients do not value__________________________Examples: Treatment - LASIK Screening - PSA testing Prevention - tamoxifen
Misuse of prefsens care results from the failure to accurately communicate the risks and benefits of the alternative treatments and the failure to base the choice of treatment on the patient’s values and preferences. Involves tradeoffs -- more than one treatment exists and the outcomes are differentScientific evidence re: outcomes may or may not be adequateDecisions should be based on the patient’s own preferences and values…But provider opinion often determines which treatment is used.
Think, pair, share
Even when we know the best evidence, we may not communicate the risks & benefits of treatment choices effectively. How do we convey our complex medical knowledge in an understandable way to patients?
DEPEND UPON: Adequate decision-specific KNOWLEDGEUnderstanding of personal values: VALUESCLARIFICATIONTreatment choices consistent with values: VALUES-CHOICE CONCORDANCE
Knowledge items If 100 women are treated with lumpectomy and radiation for early stage breast cancer, about how many will have breast cancer come back in the treated breast in the 10 years after treatment?
Knowledge items If 100 women are treated with lumpectomy and radiation for early stage breast cancer, about how many will have breast cancer come back in the treated breast in the 10 years after treatment?
Health care is complicated and decision making about health care is very complicated.
Improve the qualityand efficiency of the clinical encounter by implementing interdisciplinary clinics and incorporating:Decision Aids and Information Technology that help maximize the time allotted for decision making.
When do we find the time to fully educate and ensure that patients understand the RISKS, BENEFITS and TREATMENT ALTERNATIVES?