This document discusses patient-reported outcomes (PROs) in the SAFTINet and PEC studies. It defines a PRO as a questionnaire collected directly from patients in clinical trials or settings. PROs can measure disease control and be used for screening, monitoring, feedback, decision-making, communication, and evaluating quality. The document outlines upcoming agenda items for meetings discussing how partners currently collect and use PROs, barriers to implementation, and potential use cases for an asthma PRO measure.

1. Overview of Patient Reported
Outcomes in SAFTINet and the PEC
Marion R. Sills, MD, MPH
sills.marion@tchden.org
SAFTINet CER Project
SAFTINet

2. CER Study Question
 HEALTH CARE DELIVERY SYSTEM FACTORS, such as
the patient-centered medical home are important
to the CONTROL of
asthma (children, adults)
high blood pressure
hypercholesterolemia
PROCESSES OF
CARE
+
HEALTH CARE
DELIVERY SYSTEM
FACTORS
+ PATIENT FACTORS →
CHRONIC DISEASE
CONTROL

3. CER Study Question
 HEALTH CARE DELIVERY SYSTEM FACTORS, such as
the patient-centered medical home are important
to the CONTROL of
asthma (children, adults)
high blood pressure
hypercholesterolemia
PROCESSES OF
CARE
+
HEALTH CARE
DELIVERY SYSTEM
FACTORS
+ PATIENT FACTORS →
CHRONIC DISEASE
CONTROL
PRO

4. Patient Reported Outcome
(PRO)
 A questionnaire used in a clinical trial or a
clinical setting, where the responses are
collected directly from the patient

5. Sources of Disease Control
Measures
CHRONIC DISEASE
CONTROL Existing electronic health
record data
 Medicaid data, death files, etc.
 Patient-reported outcomes
(PROs)

6. PROs: Goals
 Screening
 Monitoring
 Feedback to patients
 Decision aid
 Facilitating team communications
 Evaluation of quality/outcomes
PRO

7. PROs in Asthma
 HEALTH CARE DELIVERY SYSTEM FACTORS, such as
the patient-centered medical home are important
to the CONTROL of
asthma (children, adults)
high blood pressure
hypercholesterolemia
PROCESSES OF
CARE
+
HEALTH CARE
DELIVERY SYSTEM
FACTORS
+ PATIENT FACTORS →
CHRONIC DISEASE
CONTROL
PRO

8. PROs in Asthma
 HEALTH CARE DELIVERY SYSTEM FACTORS, such as
the patient-centered medical home are important
to the CONTROL of
asthma (children, adults)
high blood pressure
hypercholesterolemia
PROCESSES OF
CARE
+
HEALTH CARE
DELIVERY SYSTEM
FACTORS
+ PATIENT FACTORS →
CHRONIC DISEASE
CONTROL
PRO
Existing data

9. PROs: Involving the PEC
 What PROs do you already measure?
 Who measures PROs and on which
patients?
 How do you measure it and how are PRO-
obtained data used by clinicians?
 When (and how often) do you measure it?
 Why do you measure it?

10. PROs: Involving the PEC
 What PROs do you already measure?
 Who measures PROs and on which
patients?
 How do you measure it and how are PRO-
obtained data used by clinicians?
 When (and how often) do you measure it?
 Why do you measure it?
online survey

11. Agenda items for future
meetings
 March 2: Research: Discussion of how partners
collect and document PROs, and barriers and
successes
 March 16: Technical: Use Cases
 April 6: Technical
 April 20: Research: Discussion of asthma PRO,
including relevant uses/goals, resources needed,
and potential barriers to implementation
 May 4: Technical
 May 18: Convocation in Colorado (tentative date)