Claudia Grossmann, PhD Program Officer Paul Stang, PhD Senior Director of Epidemiology, Johnson & Johnson Michael D. (Mick) Murray, PharmD, MPH Regenstrief Institute Center for Healthcare Effectiveness Research Purdue University College of Pharmacy
A discussion paper outlining examples of, and describing the potential for, continuous learning and improvement through the collection and analysis of routinely collected clinical data.
Better health and health care through learning from routinely collected data. Accomplished by establishing the practical and theoretical cases for the benefits in terms of better care, lower costs, and better health to be achieved by capturing, analyzing, and learning from routinely collected clinical data.
The learning health system requires a continuous, seamless production of knowledge, and application of this knowledge to improve care. To be sustainable the process must not impose undue burdens on those collecting data and be a routine part of the health care encounter. The increased availability of digital data from clinical care provides a dramatically increased capacity for learning and improvement.
Developing the case for patient engagement in new research in the Learning Health System Building the case using examples of successful engagements of patients and supportive stakeholders (instances where routinely collected data are used for effectiveness research)
Healthcare systems are increasingly digital due to implementation programs such as Meaningful Use. Health information exchanges are creating large regional repositories of longitudinal clinical data. Overall, the availability and usefulness of routinely collected data are growing. Public largely unaware of benefits of use.
Data Management Data Access & Use Hospital Payers Hospitals Results delivery Secure document transfer Shared EMR Credentialing Eligibility checking Labs Health Information Exchange Physicians Results delivery Secure document transfer Shared EMR CPOE Credentialing Eligibility checking Labs Results delivery Outpatient RX Data Repository Network Applications Public Health Surveillance Reportable conditions Results delivery De-identified, longitudinal clinical data Payer Secure document transfer Quality reporting Physician Office Ambulatory Centers Public Health Researchers De-identified, longitudinal clinical data Pharmacoepidemiology
Stakeholders must be engaged in the process and all require an understanding of the benefits, resources, and costs and cost-savings associated with building and sustaining such systems. Public campaign to educate the public on health care research so people feel that they are contributors to science. Training and filtering of various stakeholders so they receive information in a manner that they can comprehend (including visualization techniques).
EHR Registration Appointments Tests Procedures Vaccination Rx dispensing records Visits (outpt, ED, hosp) Death data Often missing Health-related QOL Patient satisfaction Symptoms Treatment progress (pain, depression) MD s Rx orders How Rx actually used Self-care (OTC, herbals) Caregiver information Adverse events/errors
Digitally-empowered patients for better care management Patient use of electronic portals Patients as stakeholders in better use of data for new insights Attention to those falling into the wrong side of the digital divide
A critical component of sustainable effect (benefit and safety) and reduced or avoided costs
Source: ConsumerReportsHealth.org
We can demonstrate effects of some interventions but often they are not sustained over time.
Temporal Trends in Rates of Patient Harm Resulting from Medical Care Christopher P. Landrigan, M.D., M.P.H., Gareth J. Parry, Ph.D., Catherine B. Bones, M.S.W., Andrew D. Hackbarth, M.Phil., Donald A. Goldmann, M.D., and Paul J. Sharek, M.D., M.P.H. In this retrospective study of 10 hospitals, harms to patients resulting from medical care were common (25 per 100 admissions) and did not decline significantly between 2002 and 2007. N Engl J Med Volume 363(22):2124-2134 November 25, 2010
Harm per 1000 patient-days Harm per 100 Hospital admissions Landrigan CP et al. N Engl J Med 2010;363:2124-2134
Providers Patient Advocates Industry Scientists Patient Federal Agencies Payers Policymakers
Interests The right care To the right patient At the right time For the right price Key attributes of the Learning Health System Much work to do in terms of adequate capacity and improved speed of processing from ideas to answers Public support/demand would facilitate