Supporting and Engaging Consumers PCPCC Annual Summit: All eyes on the PCMH Shannah Koss, Koss on Care LLC October 22, 2009

PCPCC Consumer Engagement Overview The Importance of Patient Centered Early PCPCC Consumer Organization Participation Consumer Advocacy Meeting PCPCC Center Activities Consumer Guidebook Future Activities

The Importance of Patient Centered Fragmentation is one of the greatest failures of the US healthcare IOMs Crossing the Quality Chasm underscored patient centered as one of six critical aims for health system improvement Sick care and only treating pieces of the individual instead of the whole person result in inappropriate and unsafe care Health and prevention must start and end with the individual wherever she or he is

Medical Home Care Coordination Only Succeeds When it is Patient Centered Joint Principles of the Patient-Centered Medical Home include: Whole person orientation Patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner. Patients actively participate in decision making and feedback is sought to ensure patients’ expectations are being met. Patients and families participate in quality improvement activities at the practice level. New options for communication (are provided) between patients, their personal physician, and practice staffs.

Early PCPCC Consumer Organization Participation Since PCPCC’s inception Consumer organizations have been a critical and active stakeholder Consumer panels are a regular feature at PCPCC conferences 2008 retreat concluded more outreach and engagement was needed Initial outreach focus was the 2009 consumer stakeholder meeting and encouragement of PCPCC Center consumer activities

Consumer Advocacy Meeting Initial consumer stakeholder meeting highlighted five main focus areas Consumer engagement work with consumers to envision, build and enable successful PCMHs Community – PCMH needs flexible models that are community-based to account for consumer and community diversity Communication – PCMH needs to address the multifaceted barriers of communication including: language, literacy, culture, age and income Grassroots – PCMH needs a bottoms up approach to create consumer and community ownership Think Broadly – given the diverse needs of consumers, PCMH models need to encompass broad community resources and disciplines

Consumer Meeting Recommendations Noted focus areas among a broad set of recommendations: Gain increased insight and input from more a diverse set of consumer representatives; consider: New media infrastructure PCPCC consumer focus groups Goals for community patient advisory committees and practice consumer advocates PCPCC considerations More information about the centers and how to participate Review and reorganize PCPCC resources based on consumer needs Pilot reporting mechanisms on consumer engagement Education and engagement models for consumer organizations and their members

PCPCC, Four ‘Centers’ Consumer Activities CMD : Community-based pilot sites surveyed about consumer engagement and lessons learned CPPI: Public program consumer engagement support is concentrating on medication management CBRI : Consumer focus is usually the employee and dependents; recently created a template letter on understanding primary care as a precursor to PCMH CeHIA : Revised EMMI survey and patient engagement framework

PCPCC Centers’ Consumer Initiatives CMD Survey 19 pilots responded Most common type of involvement – focus groups, material review or conferences The majority of pilots use some type of information technology Consumer experience surveys are the most common type of engagement Few pilots engage patients or families as collaborators CeHIA PEP Consumer Engagement Framework Foundations for effective engagement – appropriate setting, provider-patient relationship, mutual goal setting and progress feedback Accurate and complete information flow Patient activation for self- management Shared decisions making Family engagement and activation

Consumer Guidebook Resource for all stakeholders Baseline effort that will expand and grow with more support, continued learning and new ideas Captures current activities Early consumer engagement ME & MN examples PCPCC resources available today – Chapter 6 Stakeholder and member resource submitted for public use – Chapter 7 Intended to help continue the needed dialogue and support the efforts of the Consumer Task Force

Future Activities PCPCC Strategic Consumer Considerations Create a Consumer Center Establish consumer leadership in top PCPCC organization structures Determine needs and gaps in consumer engagement Develop mechanisms to address needs and gaps Develop a strategy for improved PCMH consumer communication Work with NCQA Improving the Website Continue the dialogue