Craig Kuziemsky April 24, 2009

1. The need for a MDS for HPEOLC 2. Existing work – Canada 3. Existing work - International 4. Discussion 5. Questions

“You can’t manage what you can’t measure; and you can’t measure what you can’t describe” (Peter Drucker)

Micro – individual patient & provider Meso - organizational Macro – health authority or government Common data and information System Accountability Access Health SystemInfrastructureTools & Applications Portals, web services, Web based IS MDS, Ontologies, Controlled terminologies Data warehouses, performance mgmt Process facilitation Electronic health records, CPOE, DSS, KM tools, collaborative tools Upstream Downstream Individual Patient Population ClinicalResearchEducationPopulationGovt/ Policy Patient

Comprehensive Data Sets Minimum Data Sets Information, indicators Knowledge Patient Data Policy, evaluation, research

 Definition - A minimum data set (MDS) is a predefined set of data items collected for a particular purpose. To ensure that the data are always collected in the same way, detailed definitions, instructions and lists of possible values (options) are agreed. This means that all users of the data know what items to expect and share an understanding of what they mean. The definition of minimum data sets does not prescribe specific computer systems or particular ways of working. - National Council for Hospice and Specialist Palliative Care Services and the Hospice Information Service at St Christopher’s Hospice, London.

 MDS is in essence the backbone for planning, evaluating and developing how care will be delivered  Currently HPEOLC is assessed using data not primarily collected for that purpose, often based on convenience and not value BUT the data collected determines what reports can be created and what questions can be answered  MDS enables us to implement and evaluate recommendations, strategies and best practices such as those advocated through agencies such as CHPCA or Accreditation Canada (formerly CCHSA)

 Work began in 2002 to establish a common PDS for surveillance - Collaboration between Health Canada and various palliative care centres/programs across Canada  Developed a surveillance MDS and data dictionary – Appendix A, page 19  Preliminary pilot test was conducted with the MDS

 UVic School of Health Info Science extended the national work by also studying program and clinical level data elements – 40 elements  Paper published in 2008 mapped the 40 elements to seven database schemas and the HC MDS  Differences in both data element names and definitions prevent timely and meaningful comparison of service and care delivery across HPC centres.

 Patient death data, service/program data and clinical data is particularly varied  HPEOLC relevant data – preferred place of death, cultural, ethical etc. not collected as often  Began work on a data translation engine to allow data comparisons across different centres

 BC HPEOLC Common data set  Studies of existing data include:  CIHI Western End of Life Study 2007 – location of death, hospital and community dispensed pharmaceuticals in last year of life  Other research – Dr. Francis Lau and Dr. Grace Johnston

 As well as MDS work there has been development of norms, policies & standards  CHPCA – Norms of practice (2002), Pan Canadian Gold Standards for Home Care (2006), Pediatric HPC Guiding Principles and Norms of Practice  Accreditation Canada program standards for HPC – access, continuity of care, symptom mgmt, family/caregiver satisfaction, client and family service needs

 United Kingdom - The Minimum Data Set for Specialist Palliative Care Services (1995, revised 2007) that captures data about Service management, development of local palliative care and development of national policy  UK started pediatric MDS data collection in 2005  Australia are developing the National Minimum Data Set for palliative care (NMDS—palliative care)  NHPCO (US) has developed a database and supporting MDS to measure clinical and organizational aspects

NHPCO - US Based on two parts – program/patient and outcomes (indicators)

Common themes from the studies include:  Despite efforts there is still wide variation in the data elements collected and the definitions given to those data elements  We need to link the data with the processes that take place as part of HPC delivery  We need better integration of HPC delivery on the front lines with the conceptual models and frameworks that were designed to guide HPC delivery  We need to ensure that MDS development efforts do not result in duplication of efforts

National Initiatives -CHPCA, AC (CCHSA) -Carstairs’ Report -CPAC Provincial Initiatives Centres, Programs, Hospitals, Agencies IS Development - EHR/e-health projects -Canada Health Infoway -- Provincial IS initatives Processes ->Data Quality HPEOLC

Acute Care Network Primary Care Network Community Care Network Process Data Integrating HPC into Overall Care Delivery Continuum Of Care Palliative Care Network