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Patient Engagement: The Key to Better Outcomes? Diane Blum, MSW Julie Rosen, MMHS, Schwartz Center for Compassionate Healthcare Linda Bosserman, MD, City of Hope Gena Cook, Navigating Cancer Agenda Diane Blum, MSW Patient Engagement Defined Julie Rosen, MMHS, Schwartz Center for Compassionate Healthcare A Practice Example & Lessons Learned Linda Bosserman, MD, City of Hope Clinician & Practice View Gena Cook, Navigating Cancer Technologies Role in Patient Engagement Patient Engagement: The Key to Better Outcomes? Patient Engagement Defined Diane Blum, MSW Defining the “Engaged Patient” • Activated, informed, participatory, empowered • 500,000 results in search • Leonard Kish: If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it. • Patient and family are communicating with health care team; they are collaborating in their care; they are understanding their clinical choices and decisions; member of the team What Do We Know from Patients? Alston C et.al. IOM 2012 What Do We Know from Literature? • Extensive body of literature that shows engaged patients – Are more satisfied with the care they receive – Quality of life measures are improved – Often experience better health outcomes – Reduction in costs What Do We Know from Experience? • Patients must manage own care as a result of advances in medicine and changes in health care system • Patients and families are managing drugs, wound care, rehab protocols, lifestyle changes, major financial challenges • Influences of access to information • The stresses of integrating cancer and its treatment into life: managing medical, emotional, social, financial consequences Challenges to Patient Engagement Complexity of care • For the patient • For the clinician • For the system For the Patient • Crisis of cancer and unprepared for dealing with it • Emotional consequences of anxiety, vulnerability, unpleasant uniqueness, sense of being out of control • Lack of assertiveness because of situation and character trait • Health literacy and individualized information needs • Financial barriers • Cultural norms For the Clinician • Time! • Lack of training in communication • Influences of age, gender, training • Mismatch in expectations resulting from culture, language, assessment of informational needs • Discomfort in discussing poor prognoses, psychosocial and emotional issues System Level Challenges • Fragmentation – Multiple physicians, multiple teams • Unclear assignment of responsibility • Hindrance of records • Now new models of care and reimbursement So Far • Defined engagement • Discussed why it is important • Defined barriers • Next: how to engage patients in real world practice: what is required, what are tools for it, what are barriers? Patient Engagement: The Key to Better Outcomes? Patient Engagement: A Practice Example & Lessons Learned Julie Rosen, MMHS, Executive Director, Schwartz Center for Compassionate Healthcare Compassionate Care- Essential Characteristics • Relationships based on empathy, emotional support, and efforts to understand and relieve the patient's distress and suffering; • Effective communication within interactions, over time, and across settings • Respect for and facilitation of patients’ and families’ participation in decisions and care; • Contextualized knowledge of the patient as an individual within a network of relationships at home and in the community Good Caregiver Communication is Associated with: • Increased patient and family satisfaction • Improved clinical outcomes • Improved adherence to treatment recommendations • Reduced readmissions and lower spending on diagnostic testing • Fewer malpractice claims Consumer Focus Groups (Oct 2013- Jan 2014) Two groups each in Minneapolis, New York City, Boston: • Two groups women 45-65, 3+ doctor visits, at least 1 ER visit or hospitalization in past year, half were family caregivers • Two groups women 18-44, 1-2 healthcare interactions in past year • One group men 40-60, 3+ doctor visits, at least 1 ER visit or hospitalization in past year • One group men 25-39,1-2 healthcare interactions in past year What is Important to Patients? • Knows your name and something about you • Smiles, looks you in the eye • Listens, doesn’t interrupt, nods head, doesn’t rush you, respects your time, doesn’t look at computer screen • Touch – reassuring hand on shoulder, touch on arm • Asks questions about non-medical issues (“like a friend”) How Do You Want to Feel in a Doctor’s Office? Most Important Elements* • • • • • • • • Conveys information in a way you can understand Always involves you in decisions about your care Listens attentively to you Treats you as a person, not just a disease Shows respect for you and your family Spends enough time with you Communicates test results in a timely and sensitive manner Expresses sensitivity, caring and compassion for your situation Most Important Elements* • • • • • • Considers the effect of your illness on you and your family Comfortably discusses sensitive issues Strives to gain your trust Gives you hope, even when the news is bad Strives to understand your emotional needs Shows respect for your cultural and religious belief *Tested in our 2010 national poll of 800 recently hospitalized patients and 500 doctors What Can You Do to Promote Active Patient Engagement and Promote Compassionate Healthcare? As a Healthcare Leader • • • • • • • Hire wisely Highlight best practices, share stories Create a PFAC Involve patients and families throughout the institution Peer support group Provide information to patients; seek their advice Use technology in a patient + family centered way As a Caregiver • • • • • • • Tell them what to expect Listen, do not interrupt Do not use medical jargon Ask how they would like to be involved Report test results quickly Empathize and be human Do not let time be an excuse Patient Engagement: The Key to Better Outcomes? Clinician & Practice View Linda Bosserman, MD, FACP Clinical Assistant Professor City of Hope Medical Group [email protected] Clinician and Practices Perspectives Meaningful Use1, 2,3 ICD10 Guidelines Pathways Plan Pilots IOM Quality Report EMR Use Compliance Audit Threats Quality Measures Limited $$$$$ PQRS 5 Star Medicare Expectations Family/Friends Knowledge Clinical Trials Data vs Information Media Hype End of Life Survivorship HEALTH Caregiver Perspective • Balancing Many Demands – Patient, Payer, Quality metrics, Billing/Collection, Funding, Documentation, Value Based Care Needs, Time Limits »BUT • Patient Engagement CRITICAL for Care & Outcomes – Engaged Patient necessary for decisions and compliance to achieve best outcomes • Patient defined outcomes: cost, toxicity, outcome, and satisfaction (Family, Friends and Internet also weight in!) • Payer wants best value: least cost for best health outcome • TEAM needed: standardized care plans and management Fully Engaged Patient Necessary for Best Outcomes • Patient’s preferences important in treatment planning • Patient/family need to actively participate in treatment management: – Prompting to report toxicities – Understanding and compliance to regimen and toxicity management – Care coordination and navigation needs: differ by age, resources, geography, understanding, outside support • Patient/family need to actively participate in survivorship phase: follow up, co-morbidities, diet, nutrition, exercise, screening & prevention • Patient/family need to actively engage at End of Life Patient Reported Data Critical • New Patient Intake Forms or Networked EHRs • Patient reported outcomes during therapy critical – – – – – Check Med List: what drug, dose, frequency? Interval Care Reporting: Hospital, ER, Other for CA/other? Prompted Standardized Toxicity List Advanced Care Planning prompt Other Requests • Treatment Plan, Treatment Summary • Education requests • Move from Paper to Tablets/Internet for Satisfaction – Chart by Positives only or NO CHANGE preferred Prompted Standardized Toxicities: • Four domains: – Physical, Emotional, Social, Financial – Collect prompted list of toxicities – Ensure address all symptoms and side effects – Use toxicities as Review of Systems – Minimizes suffering AND interval ER and Hospital – Meet Quality Metrics of IOM and Compliance – MANY TOOLS but what is usable & meets multiple goals? » NCCN thermometer » NCI CTC List, PROMISE program » FACT questionnaires, Edmonton Symptoms ??? – Move to electronic capture, EMR entry, MD validation – Reportable Outcomes per Regimen and Co-Morbidities Developing the Best Tool • Lots of Tools • Can’t ask for 10 questionnaires – – – – ESAS: Eadmonton Symptom assessment tool FACT: depression, toxicities, etc Meaningful use NCCN distress thermometer: what do I fix??? • NCI translated the CTC into patient language – Validated, extensive measures in all domains – Partners to MD NCI CTC • Works for standard care and TRIAL care • Standardized so everyone becomes familiar with it Patient Feedback on 5 Page Paper Report • ONLY WANT TO DO IF WE DEMONSTRATE WE USE IT! – Patients don’t like long paper survey of what doctors need • Meds, Interval care, 39 Toxicities, Others – BUT with education and IF CLINICIANS USE DATA • They get it, they come prepared with form or do in portal • Want it to be customized and faster: – Prompt past Medication List for checking – No Change option, Grade only the positives – Note what they want to talk to doctors about vs » Chronic or What they are comfortable treating – Sophisticated want it on line, do ahead of clinic – Some need help by MA and come without documents done, language, age and literacy challenges Clinicians NEED Engaged Patients for Quality • IOM Recommendations are Comprehensive • Quality Reporting Measures are Comprehensive • Patient Needs and Expectations are Comprehensive » PILOTS NEEDED TO IDENTIFY » BEST TOOLS, PROCESSES, ANALYTICS » To Improve Patient Health & Satisfaction » WITH THE RESOURCES AVAILABLE Patient Engagement: The Key to Better Outcomes? Technologies Role in Patient Engagement Gena Cook CEO, Navigating Cancer 5 ELEMENTS OF SUCCESSFUL PATIENT ENGAGEMENT Athena Health Whitepaper 5 Elements of a Successful Patient Engagement Strategy February 2014 HEALTHCARE TRANSFORMATION requires patient-centered care & analytics HEALTH IT INCENTIVES PAYMENT REFORM HITECH Meaningful Use ACO’s Bundled Payments Medical Home Hospital Re-admissions COST & QUALITY INITIATIVES CONSUMERISM IN HEALTHCARE Shifts in costs More transparency tools ASCO’s QOPI COA Patient Satisfaction Commission on Cancer Accreditation NAVIGATING CANCER 39 PATIENT PORTALS ARE NOW A CORE PRACTICE SOLUTION Yet, despite the widespread focus on ENGAGING PATIENTS & FAMILIES EMR vendors have no experience or focus designing for non-clinical users Navigating Cancer is EXPERIENCED & SINGULARILY FOCUSED on delivering services for patients & clinical users to deliver patient centered care & engagement 40 DEGREE OF ENGAGEMENT ENGAGEMENT UNLIKELY WITH BASIC PORTAL MEANINGFUL USE PORTAL • Health Information UNDERSTANDING • Secure messaging TREATING • CCDA • Patient Education MONITORING 41 A ROBUST PLATFORM TO ADDRESS PRACTICE & PATIENT NEEDS & OPPORTUNITIES PYSCHO-SOCIAL SUPPORT & COMMUNITY DEGREE OF ENGAGEMENT PATIENT REPORTED OUTCOMES CLINICAL TRIALS SURVIVORSHIP ORAL ADHERENCE PATIENT INTAKE NAVIGATION REMINDER (VISIT, MEDICATION, ETC) CORE PATIENT ENGAGEMENT PLATFORM • Patient & clinic Meaningful Use portal Education • Profile page UNDERSTANDING • Secure messaging • Calendar • Resources • Basic Daily Check-in TREATING • Patient MONITORING 42 PATIENT EXPERIENCE A COMPREHENSIVE, PERSONALIZED, COMPREHENSIVE EXPERIENCE THORUGH CARE & BEYOND UNDERSTANDING TREATING MONITORING 43 WHAT PATIENTS SAY Patients are “very likely” to… Navigating Cancer Survey, 2014 44 MEDICATION ADHERENCE & EDUCATION The right info, at the right time, appended to the patient’s health record, delivered from their clinic 9-16% increase in time on therapy at 6 months 60-80% Read 45 PATIENTS ACCESS TO HEALTH RECORDS, PATIENT COMMUNITY & TOOLS, SECURE MESSAGING EDUCATION/AD HERENCE DATA PROVIDERS ENGAGEMENT ENGAGEMENT WILL TAKE TIME & FOCUS MESSAGING REPORTING EDUCATION REPORTING SURVIVORSHIP CLINICAL TRIALS REMINDERS CARE MANAGEMENT (PATIENT REPORTED OUTCOMES +MOBILE) ANALYTICS REAL TIME ALERTING ACTIVATION SCORES BEVAVIOR REPORTING NAVIGATION NURSE INTERVENTIONS PATIENT CENTERED CARE 46 IMPROVED OUTCOMES & LOWER COSTS through patient engagement & care management 47