Summary of Data Standards Challenges: Opportunities to Fix What’s Broken

1.      Challenges to Address:

1.1.   Care, policy, and payment decisions are made with limited and/or deficient information. Comprehensive and accurate data and information about the complete details and context of care of individuals, families, groups, communities, and populations are not available to decision-makers.

1.2.   Continued reliance on existing data/information collection mechanisms that deliver partial and misleading data and information, without widespread understanding of those limitations and deficiencies.

1.3.   Lack of understanding and valuing of a mechanism to gather comprehensive and accurate data and information, and the resultant significant public health and economic risks in not having the data and information for informed decision-making.  

2.      Insight/Implications:

2.1.   Patient-centered care depends on the definition by the patient of care needs/problems (health-promotion, wellness and disease-management) and appropriate outcomes (health/wellness/comfort).

2.2.   Current data standards focus on the physician definition of care needs and outcomes.  Most non-physician interventions that are viewed by patients as relevant to their care needs and desired outcomes are not identified or addressed by current data standards (i.e., they are not measured). Disease- and pathology-based care models do not reflect patient-defined concerns. This prevents patients from making informed decisions that would maintain or improve their quality of life in health and illness.

2.3.   Effective health policy decision-making around patient-centered care is difficult to achieve in the absence of comprehensive and accurate data and information about all relevant elements of that care (for example, different types of healthcare clinicians and various contextual elements of care).

3.      Actions to Address Challenges:

3.1.   Build awareness of an integrative care model that includes all clinicians and addresses health-promotion, wellness, and disease-based care models, and the relevant data standards.

3.2.   Characterize and contrast actual models of care with misperceptions about these models of care that result from incomplete data and misinformation, and identify the risks of these misperceptions (ANA Testimony: May 29/30, 2002, August 28/29, 2002).

3.3.   Develop an action plan for migrating across the gap between integrative models of care and poorly characterized models of care, a plan that includes data standards that comprehensively and accurately identify and address wellness, health-promotion, and disease-based approaches to care and the measurable expected and real outcomes of that care(getting from here to there).

4.      Outcomes That Result From the Actions:

4.1.   Widespread understanding of the risk in relying on partial and misleading data and information and mitigation of data- and information-related challenges through improvements in the existing mechanism for data and information gathering and dissemination.

4.2.   Introduction of remedial or replacement mechanisms for gathering and disseminating comprehensive and accurate data and information.

4.3.   Care, policy and payment decisions made with comprehensive and accurate data and information.