1. © 2010 ALL RIGHTS RESERVED PROPRIETARY AND CONFIDENTIAL INFORMATION OF CLEVELAND CLINIC June 2014 Collection of Patient-Reported Outcomes in Clinical Practice Healthcare May Be Ready! Irene Katzan MD, MS

2. 2 Cleveland Clinic Knowledge Program – System that electronically collects and tracks patient reported outcomes within existing clinical work flows – Began 2007 within the Neurological Institute and has expanded – Agnostic platform – Integrates with EHR

3. Knowledge Program Questionnaires StandardCustom

4. Knowledge Program Provider Review Immediate calculation of scores Can review or complete information

5. Knowledge Program Flowsheets Depression Screen (PHQ9) of patient: 5 Father died Counseling added 2 nd event Antidepressant added Flowsheets track status over time

6. Over 50,000 encounters each month contain HSM data Over 1.34 million patient visits contain PRO data Over 1,000 providers actively contributing to data collection 173 patient or provider validated questionnaires (additional 354 individual questions) Over 330,000 individual patients with PRO data Over 500,000 completions of the Patient Health Questionnaire 9 Data as of 5/7/2014 Knowledge Program Health Status Data

7. Observation 1: Patient-entered data encompass a wide range of information. Patient-Reported Outcomes (PRO) (KP’s focus to-date) Traditional clinical information, should ideally be filed in appropriate location within the EHR Not as common (not fully implemented in KP) Functional Status General Health Perceptions Quality of Life Disease activity Patient Activation Symptoms / Review of Systems Social History Medications Health History Family History Allergy Update Health Behaviors – Physical and Nutritional – Treatment Adherence Preferences / Values Insurance / Economic Burden Access to Resources / Barriers / Needs Adapted from Bryce Reeve PhD

8. Observation 2: Measure sets that can be used for multiple purposes have best acceptance Examples of measures currently being collected in Neurology Outcome/Analysis European Quality of Life Epilepsy Quality of Life PROMIS tools Stroke Impact Scale 16 Pain Disability Index Headache Impact Test 6 Modified Rankin scale Friedrich Ataxia Scale (Ataxia) Fisher grade (ICH) Toronto Western Spasmodic Torticollis Rating Scale Clinical Care/Quality # seizures in last 4 weeks CAGE Alcohol Screen # falls in the past month Flu vaccine Epilepsy-related ER visits within the past 3 months Days missed from usual activity within past month driving Clinical Care/Analysis Patient Health Questionnaires 9 (depression screen) Epilepsy Neurotoxicity Scale Generalized Anxiety Disorder 7 STOP (OSA screen) Epworth Sleepiness Scale Early Autism Screening Tool Columbia Suicide Severity Rating Scale Impulse-Compulsive Disorder in Parkinson’s Best Practice Alerts Relevant Education information print with After Visit Summary Preselected orders

9. Observation 3: For provider data display, consider including meaningful differences and minimizing required clicks Initial (current) provider display Next version provider display (July) Provider Display Basic Features: -Basic interpretation -Longitudinal Display * Meaningful Difference * Minimization clicks

10. Observation 4: Availability of data for secondary analysis is critical for provider acceptance and overall success 3 ways to obtain patient-entered data through Knowledge Program: 1.Query tool (self-service) 2.Manual extraction (data request process) 3.Direct feeds to another database Query Tool Important to incorporate adequate resources into patient-entered data project planning

11. PED Operational Team Observation 5: Leadership support critical High-level leadership support provided by Chairman of the Neurological Institute, Chief Information Officer PED Clinical Advisory PED Clinical Advisory PED Executive Sponsors PED Data/Research Advisory PED Data/Research Advisory PED Technical Advisory PED Technical Advisory PED Institute/Center Stewards