1. Patient & Family Engagement: a Framework Patient & Family Engagement Planning Committee December 2, 2015 Marie Dotseth Catherine Schramm Kathy Welte

2. Welcome and Introductions!

3. Patient and Family Engagement Definitions Definition discussion Example definitions that “industry” uses (see handout) What organizations have developed their own, internal, definitions—or adopted one from the field? *note: continued “blurriness” around patient engagement, patient-and-family centered care, patient activation, and even service excellence. 3

4. Frameworks and Resources that Exist Today Institute for Patient and Family-Centered Care – Tremendous amount of tools, checklists and downloads—some are free of charge – Hospital and ambulatory care setting guidance, “getting started” tools and assessments – Broad range of topics in addition to safety and quality A mini toolkit, “Partnering with Patients and Families to enhance Safety and Quality” – More inclusive of patients/families themselves Gordon and Betty Moore Foundation (with AIR’s Center for Patient and Consumer Engagement) – “A roadmap for patient and family engagement in healthcare” – 8 change strategies to drive action towards increased patient and family engagement – AIR is CMS contractor for Patient Engagement AHRQ “Guide to Patient and Family Engagement” – Provider-centric, hospital-based, links to two self-assessment tools – Pre-cursor was an extensive environmental scan

5. Frameworks and Resources that Exist Today HRET/AHA Partnering to Improve Quality and Safety: a framework for working with patient and family advisors” – Brief, high level framework – Provider-centric, hospital-based Lucian Leape Institute, “Safety is Personal” – Geared towards “healthcare organizations,” very high-level recommendations – Does include a checklist for engagement, not suited for a “how-to” guide BMJ Study publication, “Patient and Family Engagement: a survey of US Hospitals” – First of its kind survey, hospital-based – Questionnaire developed from literature review and technical expert panel

6. Frameworks and Resources that Exist Today Others named by interviewees and identified through research: – Minnesota Hospital Association – AHRQ Innovation Exchange, case studies – National Patient Safety Foundation (NPSF) – Consumers Advancing Patient Safety (CAPS) “Building the future for patient safety: developing consumer champions, a workshop and resource guide” – Beryl Institute The Beryl Institute is the global community of practice dedicated to improving the patient experience through collaboration and shared knowledge. We define patient experience as the sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care. – Planetree Guided by a foundation in 10 components of patient centered care, Planetree informs policy at a national level, aligns strategies at a system level, guides implementation of care delivery practices at an organizational level, and facilitates compassionate human interactions at a deeply personal level. – Center for Advancing Health; focused more at the individual level – CMS; many tools focused at the individual level CMS – National Quality Forum (NQF); focused more at the individual level

7. Identified Gaps Resources/tools across different settings of care that are specific and actionable enough for implementation of best practices Tools for the patient/family audience for proper orientation and effective participation vs. designed for health organizations and professionals “Complementary Materials” –(AHRQ environmental scan) or paired tools to support implementation Role of new technologies that could support/hinder organizational engagement (outside of provision of patient access to personal records)

8. Grant-inspired work and objectives MAPS will synthesize existing tools and research on best practices for patient and family engagement in all settings of care in order to develop simplified, standardized guidance for providers and patients when implementing engagement best practices in different care settings. Specifically, MAPS will: Develop a simple, synthesized tool(kit) relevant to different care settings to use when implementing patient engagement best practices. – Determine whether one tool(kit) can be used by different care settings or if multiple tool(kit)s are necessary dependent on the care setting type – Include a self-assessment or “gap analysis” that any organization can use to prioritize beginning or next steps that would be most appropriate for their program – Identify resources and provide guidance for both the organization/providers as well as for individual patient/family/resident/client(s) who are asked to serve in official advisory roles – Identify and help address major issues such as privacy, data protection and other concerns that might prevent organizations from openly including outside individuals in the work of the organization.

9. Proposed Idea Interviews revealed: – Networking was the most frequently cited and most desired way to learn “how to” – Biggest identified need was actionable, implementation ideas, and what steps to take for either getting started or advancing work – “don’t need another manual to read” Environmental scan revealed: – Multiple published tools from reputable and heavily-funded resources already exist today (albeit gaps remain as many are hospital-focused and provider-centric) How can we efficiently spread effective patient engagement practices, across all settings of care in Minnesota, for purpose of improving safety and quality? – Thus, the answer here becomes the “tool(kit)” 9

10. Proposed Idea 10 “ Open Source Guidebook” -structured content by MAPS- selected organizations -then “open source” wiki-type areas for anyone to contribute their work/progress to spread ideas -leveraged at event to post table discussions and exercises real-time Complementary materials and paired tools …definitions, policies, orientation tools etc. MAPS-endorsed or newly created Gap Analysis and Self- Assessment tools Contact Library of willing professionals and patient advisors Organization Interviews “Ask the Engagement Community” listserv MAPS-endorsed other resources/guides Virtual forum to spread ideas and learn

11. Proposed Idea Dynamic, real-time, “living/breathing” vs. a publication that could become dated soon after printing Heart of the site is an “open source guidebook” – “open source gives everyone access to the blueprint, then access to universal redistribution of that design or blueprint, including subsequent improvements to it by anyone” – Use time at the community event for a type of “codethon” where groups develop and add content real-time 11

12. Proposed Idea Capitalizes on expertise of those doing the work Importantly, connects those professionals and patients on the journey – Just as accessible to patients as to health professionals Could be more innovative by making it easier to leverage familiar applications and technologies like YouTube and twitter As desired, there could be different levels of access, based on specified criteria 12

13. Proposed Idea We acknowledge challenges: – Section 508 compliance – Organizational/individual incentive for contributing new content? – Competitive environments, in some cases, could hinder sharing – Timely upkeep and ongoing maintenance – Moderator needed for content/listserve upkeep (creates a cost) 13

14. Proposed Idea 14 “Open Source Guidebook” Complementary materials and paired tools …definitions, policies, orientation tools etc. MAPS-endorsed or newly created Gap Analysis and Self- Assessment tools Contact Library of willing professionals and patient advisors Organization Interviews “Ask the Engagement Community” listserv MAPS-endorsed other resources/guides Inspiration for this virtual “tool(kit)” drawn from: Open source, “free knowledge” sharing Intuitive sites which anyone can upload and share content (including patient stories) Virtual forum where people are allowed to learn and use existing information toward creating new ideas. Easily accessed by all, or easily (but selectively) shared by authors Product user groups

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16. Discussion Questions?? Comments 16