Innovative Developments for Patient Registries in Providing Outcomes Information

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1 Innovative Developments for Patient Registries in Providing Outcomes Information Richard Gliklich MD CEO, Better Outcomes XIR, General Catalyst Partners Leffenfeld Professor, Harvard Medical School CBI Patient Registries Summit January 28-29,

2 Disclosures Technology company that enables healthcare organizations, manufacturers and other stakeholders to understand the true results and value of care delivered, and to leverage that data to offer every patient the most personalized and effective care.

3 Traditional Models of Evidence Development I N T E R VENTIONAL T R I A L S I N T E R VENTIONAL T R I A L S R E G I STRIES E H R a n d C l a i m s D A T A B ASE S T U D I E R E G ISTRIES E H R s a n d O t h e r D a t a S o u r c es Are going to change

4 Because the World is Moving to Value-Based Care CMS representing 35% ($1.1T) of U.S. healthcare spend, is driving a structural reform in reimbursement from Fee-For-Service to Value-Based Estimates from CMS presentation at HIMSS 2015; alternative payment models defined as ACOs or episodes / bundlesc HHS set an explicit target of 50% of Medicare payments through Value-Based Alternative Payment Models by 2018 Commercial payers are expected to switch to partially or fully capitated models in line with or slightly after CMS Twenty health systems, health plans, consumer groups and policy experts formed the Health Care Transformation Task Force, and aim to have 75% business based on value by 2020 (Sample Members: Aetna, HCSC, BCBS, Montefiore, Providence, Partners, Trinity) Source: HHS; CMS; McKesson

5 Value-Based Care The two most prevalent forms of Value Based Care ACOs (full capitation) and Bundles / Episodes (partial capitation), are gaining significant traction ACO Coverage Millions of Covered Lives 20 Projected Uptake of Bundles Percent of HC Spend Represents growth from ~$250B to ~$650B in 2020 Source: HHS; CMS; McKesson; Health Affairs

6 A Value-Based World Demands Measurement Healthcare organizations need to understand the value (value = outcomes / cost) of the care they provide Healthcare providers will increasingly seek evidence that is generated locally The demands for information will push collection to be done more continuously To meet these demands, they will seek to leverage their existing health information systems as well as other sources of data

7 CMS (and other payers) will incentivize these changes to outcomes and value

8 CMS (and other payers) will incentivize these changes to outcomes and value

9 CMS (and other payers) will incentivize these changes to outcomes and value

10 CMS (and other payers) will incentivize these changes to outcomes and value

11 Consumers (i.e. patients) will play a larger role The other major trend in healthcare is the power of the consumer.

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15 Registry (and all evidence) development will be increasingly patient centric Registries will be developed with the input of patient partners (patient and caregiver representatives in the development of registries and studies). They will be relevant and understandable to and increasingly actionable for, the patient Ebook based On 3 rd Edition The Increasing Focus on the Patient in Patient Registries Fourth Edition (in development) New Chapters: Direct to Patient Registries and Other Patient Centric Designs Engaging Patients as Partners throughout the Registry Lifecycle

16 Technology will be increasingly important At the Patient Level: Mobility PROs And at the Provider level

17 Driven by an Unprecedented Proliferation of Data Healthcare data volume will increase more than 10X between 2013 and 2020 EMR Usage Percent of Physician Usage Volume of Healthcare Data Exabytes ,500 2,000 1,500 1, , ,388 1,696 2,005 2, Driven by the HITECH Act ($19B government incentive), EMR usage has exploded over the last five years; it is likely to continue expanding to 95% penetration by 2020 Source: EMC; IDC; CIO Magazine; CDC Survey, MedScape EHR report; Healthcare Informatics

18 HCPs want to leverage their existing EMR and other technology investments Massive databases will become the rule rather than the exception Big Data technologies including machine learning and natural language processing (NLP) will be used more commonly with healthcare data

19 Evidence will need to be more than descriptive It needs to be personalized, prescriptive and actionable to generate sufficient value for HCPs and patients

20 Outcomes will be more standardly defined From Gliklich R, et al. Outcome Measurement Framework, JCER, in press

21 Learning Health Systems will Emerge

22 A Learning Health System: Collects and analyzes the experience of all patients so that every patient can be offered the most effective and efficient care or the most promising research. Learning Health Systems employ Virtuous Learning Cycles: Assemble Data Analyze Data Interpret Results Provide Feedback Take Action At a broader level this enables: Pursuit of Best and Safer Care at Lower Cost: Communities of interest discover what interventions are most cost-effective and are supported in implementing them. Consumer Empowerment: Patients facing difficult medical decisions discover the experiences of other patients like them.

23 New Registries will be the Cornerstone of Learning Health Systems Quality Assurance Reports Patients Enrollment, Demography, Risk Factors, Initial Evaluation Ongoing Treatments, Intermediate Outcomes Outcomes, Final Disposition Uniform, clinically rich data including risk factors, treatments and outcomes points for a particular disease or procedure From multiple sources (doctors, patients, hospitals) and across care settings (practices, hospitals, home) Leverages HIT systems through interoperability and datasets from other sources through linkage Uses standardized methods to assure representative patient sample, data quality (accuracy, usability, meaning, completeness) and comparability (risk adjustment) Follows standardized models so that data can be accepted, aggregated, compared

24 And Learning Health Systems will be the backbone of Registries

25 New Types of Registries can meet the Traditional Definition Registry Definition: Organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition or exposure and that serves one or more predetermined scientific, clinical or policy purposes. Traditional Registry Uniform data Specified outcomes Population defined One or more purposes New Registry (in LHS with standardized outcomes) Uniform data (may derive) Specified outcomes Population defined One or more purposes

26 But to create these New Registries will require addressing the major problem with health information: Fragmentation Fragmentation leads to faulty inputs (e.g. misdiagnoses) And erroneous or missing outputs (i.e. outcomes) Defragmentation requires reconstituting the data from multiple sources... And corrects both inputs and outputs Defragmentation generates a more accurate Patient Journey

27 These Registries will serve Multiple Purposes Provide ongoing information on value Connect the patient to the healthcare system Meet quality reporting needs Be used for predictive analytical models Serve as infrastructure for sponsored registries

28 Regulatory Agencies and Manufacturers will learn to leverage a New Infrastructure for Registries and Evidence Development Existing data will be leveraged where it is valid and available Learning health systems will leverage registries for routine clinical practice and decision support, registries will build off of learning health systems to attain scale, interventional trials will leverage both to utilize EHR source data and for patient recruitment. Registries will be increasingly hybrid, creating both technical and scientific complexities but tremendous cost savings Patients will be accessed directly through better mobile technologies

29 Summary Evidence needs will be increasingly continuous, local and patient centric Driven by an ongoing need to measure and maximize value Leveraging technology Responsive and relevant to patients The focus of measurement will shift to outcomes which will be more standardly defined Learning Health Systems will be the vehicle And, new types of registries will be at the core of Learning Health Systems Pharma and other stakeholders will need to leverage mobility and patient centricity, Learning Health Systems, and big data technologies rather than continue to create denovo standalone programs to accomplish their goals Local will be the new frontier for reimbursement decision making ( think globally, prove locally )

30 Questions? Contact: Rich Gliklich MD (M) 32