PARTNERING WITH PATIENTS TO DRIVE SHARED DECISIONS, BETTER VALUE, AND CARE IMPROVEMENT An Institute f Medicine Wrkshp Spnsred by the Grdn and Betty Mre Fundatin and Blue Shield f Califrnia Fundatin A LEARNING HEALTH SYSTEM ACTIVITY IOM ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE FEBRUARY 25-26, 2013 THE NATIONAL ACADEMY OF SCIENCES 2101 CONSTITUTION AVENUE, NW WASHINGTON, DC Meeting gals 1. Build insights and recgnitin n the necessity f increased patient, family, and citizen engagement in achieving better utcmes and lwer csts in health care. 2. Explre what has been learned abut effective appraches fr building patient demand and invlvement in imprving evidence, care, and value including principles and barriers. 3. Cnsider strategies and plicies fr activities t be undertaken at multiple levels t advance patients, in partnership with prviders, as leaders and drivers f care delivery imprvement thrugh the prtected use f clinical data, infrmed, shared decisins, and value imprvement. 4. Identify imprtant plicy and research pprtunities fr develping the additinal insights needed t accelerate prgress. Please pick up a bxed lunch in the atrium. Day 1: Mnday, February 25, 2013 12:30 pm Welcme, Intrductins, and Overview Welcme frm the IOM Michael McGinnis (Institute f Medicine) Opening remarks and meeting verview Dminick Frsch (Grdn & Betty Mre Fundatin) Christine Bechtel (Planning Cmmittee Chair, Natinal Partnership fr Wmen & Families) 1
12:45 pm Lunch keynte T Imprve, Health Care Must Partner With Patients and Families Jnathan Welch, Harvard Medical Schl 1:30 pm Patient-clinician cmmunicatin and the tls fr change 3:00 pm Break Wrking frm the dual challenges f patients effective use f available infrmatin and clinicians effective integratin f available knwledge, explre appraches and strategies fr widespread acceleratin f shared decisin making. Sessin questins: What is the pathway tward increased demand fr shared decisin making? What are the necessary infrastructure elements t supprt widespread shared decisin making? What strategies exist t create a culture f expectatin fr shared decisin making n the part f bth prviders and patients/families? What cmpetencies are required f patients, families and clinicians t supprt shared decisin making? Mderatr: Lyn Paget, Health Plicy Partners The key elements f infrmatin, cnnectedness, and cntinuity fr patient engagement in health care decisins Gary Langer, Langer Research Assciates Planned patienthd: setting the expectatin fr shared decisin making Sherrie Kaplan, University f Califrnia, Irvine Clinician cmpetencies fr effective shared decisin making Eric Hlmbe, American Bard f Internal Medicine 3:15 pm Patient-clinician cmmunicatin and the tls fr change (cntinued) Innvative mdels f shared decisin making: Building a culture that prmtes shared decisin making Grace Lin, University f Califrnia, San Francisc The patient supprt crps: An innvative staffing apprach t supprt patients in shared decisin making Jeff Belkra, Margt Zarin-Pass, and Ekene Obi-Okye University f Califrnia, San Francisc Implementing decisin aids fr increased patient engagement and reduced csts David Arterburn, GrupHealth 4:30 pm Summary and preview f next day 2
5:00 pm Adjurn 7:30 am Cffee and light breakfast available ********************************************* 8:00 am Welcme, brief agenda verview Day 2: Tuesday, February 26, 2013 Christine Bechtel, Natinal Partnership fr Wmen & Families (Planning Cmmittee Chair) 8:15 am Knwledge generatin and care imprvement As many patients supprt sharing their prtected clinical and utcmes data fr research that imprves care and utcmes fr all patients, identify ptential pathways and strategies fr imprved sharing and use f insights gained frm the care experience. Sessin questins: What is the state f play with respect t using patient data fr research and care imprvement? Patient perceptins Research realities Regulatry envirnment Hw des public pinin n research fr care imprvement demnstrate supprt fr increased data sharing? What barriers are present in the public s understanding f the benefits and harms f data sharing, and hw might they be vercme? What are the necessary infrastructure elements t supprt widespread data sharing fr care imprvement? What is the pathway tward increased use f prtected clinical and utcmes data fr care imprvement? Mderatr: Sue Trinidad, University f Washingtn Ethical Challenges f a Changing Research Paradigm Nancy Kass, Jhns Hpkins Berman Institute f Biethics Meaningful chice in a learning health care system: the relatinship between privacy and data sharing fr research Alice Leiter, Center fr Demcracy & Technlgy The infrastructure needed fr patient-engaged translatinal research Ken Mandl, Bstn Children s Hspital Patient engagement and data sharing fr imprvement, innvatin and discvery Peter Marglis and Jill Plevinsky, Cincinnati Children s Hspital Medical Center 3
9:30 am Knwledge generatin and care imprvement (cnt.) Patient perspectives n cnsent fr infrmatin use Evette Ludman, GrupHealth Research Institute New paradigms fr patient engagement in research fr care imprvement: Sally Okun and Laura Phillips, PatientsLikeMe Greg Biggers, Genmera Research that imprves care as a cmpetitive advantage: cmmunicating the imprtance f data sharing t the public Hlly Ptter, Kaiser Permanente 10:45 am Break 11:00 am Changing Expectatins: Bringing Transparency t Cst and Quality Infrmatin Taking int accunt the changing landscape fr health care payment, cnsider methds fr deepening patient, family, and prvider knwledge f health care csts and quality, and their implicatins. Sessin questins: What are pssible strategies fr increased patient and family recgnitin f highquality, efficient health care? Hw d we increase the culture f expectatin fr patient and family health care chices that are based n value (e.g., quality and cst)? What infrmatin is needed t supprt patients and families in making value-based health care chices? Key cnsideratins: Kinds f infrmatin needed, ie: cst, quality Presentatin f infrmatin Accessibility Ease f use Resulting behavir change Mderatr: Jhn Santa, Cnsumer Reprts What patients perceive as valuable and hw t effectively cmmunicate infrmatin n cst and quality Judy Hibbard, University f Oregn Shshanna Sfaer, Baruch Cllege, CUNY The rad t increased patient engagement thrugh public reprting f perfrmance infrmatin Barbra Rabsn, Massachusetts Health Quality Partners Raising awareness n quality and waste Daniel Wlfsn, ABIM Fundatin Seeking the citizen vice Marge Ginsburg, Center fr Healthcare Decisins 4
1:00 pm Lunch keynte Hw American Health Care Killed My Father David Gldhill, Game Shw Netwrk 2:00 pm Driving the demand Explre crss-cutting strategies t advance patients, in partnership with prviders, as leaders and drivers f care delivery imprvement thrugh infrmed, shared decisin making, the authrized use f clinical data fr research, and value imprvement. Mderatr: Susan Reinhard, AARP Behaviral ecnmics and value generatin Kevin Vlpp, Philadelphia VA Medical Center Cmmunicating value t the public Tresa Undem, PerryUndem Scial media as a tl fr change Kelly Yung, Rheumatid Arthritis Warrir 3:00 pm Building a pathway frward Reflecting n the presentatins and discussins ver the curse f the tw-day wrkshp, participants will engage in an pen dialgue t define the pathway frward fr building patient demand fr a cntinuusly learning health system. Mderatr: Christine Bechtel, Natinal Partnership fr Wmen & Families Panelists: Planning cmmittee members Mark Grman, Patient advcate Art Levin, Center fr Medical Cnsumers Susan Sheridan, Patient-Centered Outcmes Research Institute Terry Adirim, Health Resurces and Services Administratin 4:15 pm Summary and next steps 4:30 pm Adjurn Thanks frm the Chair Christine Bechtel, Natinal Partnership fr Wmen & Families Cmments and thanks frm the IOM Michael McGinnis, Institute f Medicine ********************************************* 5
Planning Cmmittee Christine Bechtel, MA, Natinal Partnership fr Wmen & Families (Chair) Terry Adirim, MD, MPH, Health Resurces and Services Administratin Leah Binder, MA, MGA, The Leapfrg Grup Vernica Gff, MS, Natinal Business Grup On Health Mark Grman, Patient advcate Paul Grundy, MD, MPH, IBM Art Levin, MPH, Center fr Medical Cnsumers Jim Mangia, MPH, St. Jhn's Well Child & Family Center Lyn Paget, MPH, Health Plicy Partners Eric Racine, PharmD, MBA, Sanfi U.S. Susan C. Reinhard, RN, PhD, AARP Craig Rbbins, MD, MPH, Kaiser Permanente Jhn Santa, MD, MPH, Cnsumers Unin Susan Sheridan, MBA, MIM, Patient-Centered Outcmes Research Institute Susan Brwn Trinidad, MA, University f Washingtn Staff fficer: Claudia Grssmann, PhD cgrssmann@nas.edu (202) 334-3867 6