Adding the Patient Perspective to Comparative Effectiveness Research

On September 15, 2009, Albert W. Wu made this presentation at the 2009 Annual Conference. Select to access the  Microsoft PowerPoint version - 2.38 MB

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Johns Hopkins University

School of Public Health

Protecting Health, Saving Lives—Millions at a time

©2009, Johns Hopkins University. All rights reserved.
 

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Adding the Patient Perspective to Comparative Effectiveness Research

AHRQ Annual Meeting
14 September 2009

Albert Wu, MD, MPH
Professor of Health Policy & Management
Director, Hopkins DEcIDE Center

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"A Dow-Jones for health care?"

Image: MOS Short-Form 36 Item Health Survey

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Image: Chicago Tribune
Putting pain in perspective
Doctors trying to measure how much it hurts
By Vanessa McMains
Tribune reporter
August 16, 2009

"I think this is an idea whose time has come," said Dr. Albert Wu, a professor of health policy and management at Johns Hopkins University... "We are at a point where it is possible to measure health from the patient's point of view," Wu said, "and it's now very important that we take advantage of that knowledge."

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Image: Chicago Tribune
Putting pain in perspective
Doctors trying to measure how much it hurts
By Vanessa McMains
Tribune reporter
August 16, 2009

"I think this is an idea whose time has come," said Dr. Albert Wu, a professor of health policy and management at Johns Hopkins University....."We are at a point where it is possible to measure health from the patient's point of view," Wu said, "and it's now very important that we take advantage of that knowledge."

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IOM Definition (2009)

CER is the generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat and monitor a clinical condition, or to improve the delivery of care. The purpose of CER is to assist consumers, clinicians, purchasers, and policy makers to make informed decisions that will improve health care at both the individual and population levels.

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Quality of Care

The degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.

IOM, Crossing the Quality Chasm, 2001

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Problems with Data

Administrative data can capture health care utilization  completely.

But are limited in clinical detail and do not include the patient perspective.

Clinical data may be incomplete in capturing utilization from other settings, contain clinically understandable information, but  rarely include patient reported data.

Patient recall of health care utilization is imperfect, and patients can only report some elements of clinical care, but are best at reporting their own health status.

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Some Questions Cannot Be Answered Without Asking the Patient

• The main objective of much of health care is improved health-related quality of life
  • Reduction in pain (hip replacement)
  • Improved functioning (cataract extraction)
  • Aesthetic outcome (surgery for lipoatrophy)
• Patient is best judge of HRQOL and symptoms
• Patient best observer of some events and health outcomes (complications)

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Potential Data Sources for CER

Image: Red stool with topics around it.

• Clinical Data
• Administrative Data
• Patient Reported Outcome Data

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Just Add PROs

• Randomized controlled trials
• Cohort studies
• Registries

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Potential Data Sources for CER

Image: Red stool with topics around it with a doubled sided arrow connecting Patient Reported Outcome Date to Clinical Data.

• Clinical Data
• Administrative Data
• Patient Reported Outcome Data

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National Health Service (NHS)

Image: map with regions color coded.

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PROMs—April 1, 2009

"...NHS will become the first health system in the world routinely to collect patient-reported outcome measures. Newly released guidance for PCTs and hospitals—including independent sector organisations supplying care to NHS patients—sets out what needs to be collected, when, and by whom and how the new data will be integrated with other routine patient statistics"

THE KINGS FUND INSIGHT. PROMS: COUNTING WHAT MATTERS MOST TO PATIENTS. FEBRUARY 2009 ISSUE 7

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High Quality Care for All, the NHS Next Stage Review Final Report (June 2008)

"Effectiveness of care. This means understanding success rates from different treatments for different conditions. Assessing this will include clinical measures such as mortality or survival rates and measures of clinical improvement. Just as important is the effectiveness of care from the patient's own perspective which will be measured through PROMS"

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Requirement from PROMs

The new Standard NHS Contract for Acute Services, introduced in April 2008, includes a requirement for providers to report on PROMs

NHS Elective Surgery Patients

• Unilateral hip replacements—primary and revisions
• Unilateral knee replacements—primary and revisions
• Groin hernia surgery
• Varicose vein surgery

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Patient Outcomes in Surgery (POiS)

Jiri Chard
Senior Project Coordinator, Patient Outcomes in Surgery (POiS), Clinical Effectiveness Unit,
The Royal College of Surgeons of England Registered charity number: 212808

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POiS Audit: PROMs

• Objective
• Patient voice
• Pragmatic

Hip replacement—Oxford Hip Score & EQ-5D

Knee replacement—Oxford Knee Score & EQ-5D

Varicose vein surgery—Aberdeen Vein Questionnaire & EQ-5D

Inguinal groin hernia—EQ-5D only

Plus: Demographics, Co-morbidities, Complications

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PROMs

Condition, site or procedure specific PROMs

Example, Oxford knee score

Image: During the past 4 weeks, how would you describe the pain you usually had from your knee?

None, very mild, mild, moderate, severe

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Complications

Image with problem descriptions and yes, no, unsure options.

Did you experience any of the following problems after your operation? Please tick one box for each problem:

• Allergy or reaction to drug
• Urinary problems
• Bleeding
• Wound problems

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Data collection

Image: Low impact on clinical path and linkage to other NHS data

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Image: Varicose Veins Surgery Questionaire

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Image: Varicose Veins Surgery Questionaire

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Image: Varicose Veins Surgery Questionaire

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POiS Audit: Administrative data linkage

• NHS Strategic Tracing Service
  • Mortality
• National Joint Registry
  • Procedure information
• Hospital Episodes Statistics
  • Previous and subsequent treatment
• Issues
  • Lag in when data becomes available
  • Patient consent

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Image: Electronic Health Records

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Image: Electronic Health Records

NYT, Sept 10, 2009

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Electronic Health Records (EHR)

How can EHR be structured to include PRO

• As clinical indicator that can be tracked, profiled
• Useable for CER?

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Johns Hopkins Medical Institutions EPR

Image: Johns Hopkins EPR laboratory grid with abnormal results highlighted in yellow for the physician's attention

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Patient Viewpoint

• A Web-based system with a database back end for management and storage of patient responses
  • Developed using Microsoft ASP.Net and SQL database
• Linked to the electronic medical record
• Three main functions provided by the system:
  • Clinicians select questionnaires to administer to patients and how often
  • Patients enter responses, submit comments, and view the results of their response
  • Clinicians have a text and graphical view of patients' responses and scores over time

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Data Security

• Database and programming code located on separate servers
• Servers backed up regularly and backups stored at a remote location
• Secure Sockets Layer secure the site as patients enter their responses and physicians view the results
• Access to the system is controlled by requiring username and password

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Patient Web site

Image: Patient Viewpoint online patient survey screen.

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Patient Web site

Image: Patient Viewpoint online patient physician recommended survey screen.

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Patient Web site

Image: Patient Viewpoint online patient sample question screen.

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Clinician Web site

Clinician logs in and can search for patient

Image: Patient Viewpoint online patient search screen.

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Clinician Web site

Image: Patient Viewpoint online edit schedule screen.

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Clinician Web site

Image: Patient results for different dimensions of health are plotted and flowed over time for clinicians to view.

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Patient-Reported Outcomes Measuremen Information System
Dynamic Tools to Measure Health Outcomes From the Patient Perspective

• Emotional distress:  depression, anxiety, anger sub-banks
• Fatigue
• Physical Function
• Pain Impact
• Pain Behavior
• Sleep/Wake Disturbance
• Satisfaction with Social Role Participation
• Satisfaction with Discretionary Social Activity Participation

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Potential Data Sources for CER

Image: Red stool with topics around it with a doubled sided arrow connecting Patient Reported Outcome Date to Administrative Data.

• Clinical Data
• Administrative Data
• Patient Reported Outcome Data

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Administrative Data

• How to augment administrative/corporate data?
  • Medicare Part A, B (D)
  • Ingenix / UnitedHealthcare
• One of the gaps in healthcare research is tying patient reported data (outcomes, behavior) to actual healthcare utilization

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Managed Health Care Association Consortium on OMS

• Aetna Life Insurance Company
• Alliance BC/BS (MO)
• Ameritech
• Anthem BC/BS (OH)
• BC/BS of Illinois
• BC/BS of Massachusetts
• BC/BS of Rochester (NY)
• Becton Dickinson
• Digital Equipment Corp.
• Fallon Health Plan
• GTE Service Corp.
• Harvard Pilgrim Health Care
• Health Trust, Inc.
• Intermountain Health Care
• James River Corp.
• Kaiser Permanente/Ohio Region
• Lockheed Martin Corp.
• Marriott Interntl. Corp.
• Matthew Thornton Health Plan
• Proctor & Gamble
• Promus Companies
• Trigon BC/BS (VA)
• United Health Care
• U.S.Q.A. (US Healthcare)
• Xerox Corp.

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Study Design

• Sample from administrative records (or medical records) persons with 2 or more asthma diagnoses in past 2 years
• Mail self-administered questionnaire with reminder and telephone follow-up
• Send patient-identified physician caring for asthma a brief questionnaire
• Repeat at one year intervals

Diette GB et al, Arch Intern Med 1999

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Asthma Predictor and Outcome Variables

• Treatment, Adherence
  • Inhaled corticosteroids
  • Peak flow meter
• Self-Management
  • Flare
  • Adjust
  • Avoid
• Health Status
• Satisfaction
  • Phone
  • Communication
  • Overall
  • Wait

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Adding PRO and Administrative Data

Image: Survey data linked to pharmacy and medical utilization data using unique patient IDs generated automatically

These data are linked by a third party that strips the IDs before providing the desired analytic  dataset

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Example: Effectiveness of Bariatric Surgery in People with Diabetes

• Predictor variables
  • Body mass index (BMI)
  • Diet (adherence)
• Outcome variables
  • Physical, mental, social health
  • Body image

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Contact

Albert W. Wu, MD, MPH
Health Services Research Center
Johns Hopkins Bloomberg School of Public Health
624 N. Broadway, Room 653
Baltimore, MD, 21230
awu@jhsph.edu