Measuring what matters to patients:

concepts & cases

The Health Foundation

Improvement Science Development

Group

January 7, 2013

Eugene C. Nelson, DSc, MPH

The Dartmouth Institute

Dartmouth-Hitchcock Health System

Acknowledgements: J. Weinstein, R. Reid, S. Lindblad, J. Wasson, C. Kerrigan, J.

Kirk, P. Batalden, et al and financial support from The Dartmouth Institute, The

Dartmouth Center for Healthcare Delivery Science, the Robert Wood Johnson

Foundation, PCORI and NIH-NIA.

Wayne Gretzky

2

Gretzky Group: Health Affairs 2013Short

Answer

Value:

Outcomes

+

Experiences

+

Costs

Key Patient Outcomes

Experience

Disease Function

Risks Costs

Competence

Person ClinicianCo-Production

** Clinical microsystems, i.e., the place where patients and providers meet and interact for the benefit of patients (12)

Aim: measures to support co-production of health* & health care in microsystems**

Clinical Microsystem

Key measures Health Determinants*

• Genetics

• Environment

• Lifestyle

• Health care

At risk

New condition

Recover/Reduce Burden

An old story … great clinical results &

better functional outcomes …

because of functional screening

4

Insert JAMA article

Jack Kirk, MD

Founder

Dartmouth COOP Project

JAMA 1983

x

Case 1

55

Using PROMs with Individuals:

Dartmouth Spine Center

© 2000, Trustees of Dartmouth College, Batalden, Nelson, Wasson

Referral or VisitRequest

Orientation&

PROMs

InitialWork Up

Plan of Care

FunctionalRestoration

Chronic CareManagement

AcuteCare

Management

DiseaseStatus

ExpectationsFor Good Care

Sunk Costs

Functional &Risk Status

DiseaseStatus

ExperienceAgainst

Need

IncrementalCosts

Functional &Risk Status

Palliative Care

People withhealthcare needs

People withhealthcareneeds met

Feed Forward

Feedback

Improvement registry

Public reports website

SPORT & research

Case 2

Patient Perception of OutcomesHistory &

Symptoms

Red Flags

The summary report generated from patient-reported data is critical to

a physician's ability to care for a patient: same page careFunctional

Status

Risk Status

Disease

Status

“practicing without it …flying a plane without instruments”

1.64

QALY

1.44

QALY

Functional

Clin

ical

Costs

Satis

factio

n

Reduced

Oswestry

Symptoms

Satisfied With

Improvement

Total Direct &

Indirect Costs

Physical SF-36

ImprovementHerniated Disk Outcomes @ 2 Years

Non-SurgerySurgery

44 Ave Age

43% Female

30 Ave Age

45% Female

Cost Per Quality

Adjusted Life Year Added

By Surgery $34,355

$74,870

44

30

59%

78%

-25

-37

$13,108

$27,341

$34,355

Moving research results

back to patient care …

risk calculator

used at point of care

for Shared Decision

Making about likelihood

of outcomes based on

different treatments

My risk calculator

Sweden: Rheumatology

Quality Registry (SRQ)

• SRQ uses PROMs feed forward data in

flow of care: better care for individuals,

practice improvement, new care models,

retrospective & prospective research &

better measured outcomes for Sweden

RA patients

8

Staffan Lindblad, MD

Case 3

Dashboard for a

Rheumatology

Patient

Swedish National

Quality Registry …

patient is

doing better …

N of 1 experiment…

Responded to biologics

January - March

June - December

Functional Outcomes

Clinical Outcomes

By the way … Swedish health system is doing betterAll Patients in the SRQ, from 1994 – 2006*

*Black line shows DAS at initial visit and blue after 6 months and turquoise after 12 months.

Patients sicker at 1st visit

Patients better at 12 months

From front line practice

to national policy

11

My

Health

Status

My

Healthcare

Decisions

My

Healthcare

Plan

My

Health

Outcomes

Patient Reported Metrics + Clinical Metrics =

Guidance System for Getting It Right …

•Health care decisions right for Amy

•Health care plans right for Amy

•Health care outcomes best for Amy

•Thus, Amy is able to co-produce her care

What measures matter most to patients

at the front lines is DYNAMICAmy

Case 4

Lessons Learned

• If we fail to use patient reported outcomes to plan

care we may be flying blind (1980s)

• Patient reported information can be used to guide

shared decision making, build a care plan & track

treatment outcomes (1990s)

• Outcomes are co-produced by people & clinicians

who are guided by health status measures & the

person’s goals that evolve over time (2000s)

12

Selected References1. Black N. Patient reported outcome measures could help transform healthcare. BMJ 2013, Jan 28; 346:f167.

2. Boyce MB, Brown JP. Does providing feedback on patient-reported outcomes to healthcare professionals result in

better outcomes for patients? A systematic review. Qual Life Res 2013, Mar 17.

3. Reuben DB, Tinetti ME. Goal-oreinted patient care: an alternative health outcomes paradigm. 2012 Mar 1 NEJM

366(9):777-9.

4. Essen A, Lindblad S. Innovation as emergence in healthcare: unpacking change. Soc Sci & Med 2013, (93): 203-211.

5. Wu AW. Advances in the Use of Patient Reported Outcome Measures in Electronic Health Records Including Case

Studies. Nov 7, 2013. PCORI National Workshop to Advance the Use of PRO Measures in Electronic Health Records.

Atlnata, GA.

6. Meyer GS, Nelson EC, Pryor DB, James B, Swensen SJ, Kaplan GS, Weissberg JI, Bisognano M, Hunt GC, Yates GR,

Hunt GC: More quality measures versus measuring what matters: a call for balance and parsimony. BMJ Quality and

Safety Journal August 2012. Published Online First: 14 August 2012 doi: 10.1136/bmjqs-2012-001081

7. Snyder C, Aaronson NK, Choucair AK, et al. Implementing patient-reported outcomes assessment in clinical practice: a

review of options and considerations. Qual Life Res2012 Oct;21(8):1305-14.

8. Nelson EC, Butterly J, Colacchio TA, Mastanduno MP, Foster TC, Batalden PB. Better Patient and Population

Outcomes: Practical Approaches that Health Care Systems Can Adopt for Measuring the Health of Patients and

Populations, in Sustainably Improving Health Care: Creatively Linking Care Outcomes, System Performance and

Professional Development Batalden PB, Foster TC (eds.), Radcliffe Publishing, Ashland, Ohio, 11-31, 2012.

9. Nelson EC, Hvitfeldt HF, Reid R, Grossman D, Lindblad S, Mastanduno MP, Weiss LT, Fisher ES, Weinstein JN. Using

Patient-Reported Information to Improve Health Outcomes and Health Care Value: Case Studies from Dartmouth,

Karolinska and Group Health. Technical Report. The Dartmouth Institute for Health Policy and Clinical Practice. 2012

10. Wasson JH, Forsberg HH, Lindblad S, Mazowita G, McQuillen K, Nelson EC. The Medium Is the (Health) Measure -

Patient Engagement Using Personal Technologies. Journal of Ambulatory Care Management. 35 (2); 109-117April-June

2012, doi: 10.1097/JAC.0b013e31823a235e

11. Nelson EC, Fisher ES, Weinstein JN: A Perspective on Patient-Centric, Feed-Forward “Collaboratories”in IOM (Institute

of Medicine) Engineering a learning healthcare system: A look at the future: Workshop summary, The National

Academies Press, Washington, DC, 149-170, 2011.

12. Nelson EC, Batalden PB, Godfrey MG, Lazar JS: Value by Design: Developing Clinical Microsystems to Achieve

Organizational Excellence, Jossey-Bass, 2011.

13. Hvitfeldt H, Carli C, Nelson EC, Mortenson DM, Ruppert BA, Lindblad S. Feed Forward Systems for Patient Participation

and Provider Support; Adoption Results from the Original US Context to Sweden and Beyond. Quality and Safety in

Health Care, 18(4); 247-256, October-December 2010.

14. Christensen CM, Grossman GH, Hwang J. The innovators prescription: a disruptive solution for health care, McGraw-

Hill, 2008.

15. PROMIS Measures: www.promis.nih.org/ (last accessed December 31, 2013)

Aim: Patient-centered decision support for co-production of good care, better health & more competence in self-management.

Key Mechanism: Integrating patient’s voice into flow of care & EHR to co-produce care plans that reflect needs & values.

Feed Forward Clinical Data

Key Patient Outcomes

Experience

Disease Function

Risks Costs

Competence

Patient & Family System

Provider & Care Team System

The Clinical Microsystem

Co-Production

How to Make Patient Reported Data Fit for the Future?

Feed Forward PROMs Data

Patient Value Network Features

• Curated & facilitated**• Patients with shared problem**• Subject matter expertise**• Peer support**• Information I need for self-care**• My personal health plan• E.g., PatientsLikeMe, HowsYourHealth

Auto Immune Complex

Patient facilitated Networks

Patients Pull

Clinical Registry Features

• Feed forward PGHD at point of care for care planning & outcomes tracking**

• Comparative data for practice improvement**

• Research Database as by-product**• Maintenance of Certification• PQRS (Physician Quality Reporting

System) data feeds• Data Flows Designed into Work Flows• E.G. SRQ, NPF Registries

Providers Pull

Clinical Registries

© Copyright 2013: E.C. Nelson, P. Batalden, S. Lindblad

PHR EHR

Skating to where the puck

is going to be