Outcomes Research - Difficulties

Difficulties

• Fragmentation of outcomes research: Databases and patient registries are fragmented and limited in the number of patients, and many are of unknown data quality. Studies with a small number of patients in health systems limits the use of proper statistical methods and inferences from particular studies. Limited information is available about certain priority populations and sub groups.

• Coordination across outcomes research framework: A number of groups conduct outcomes research within the United States and across the federal government but much of this research effort is not coordinated.

• Underrepresentation of certain subgroups in outcome studies: Efforts must be made to attain information about the elderly, persons with disabilities, and racial and ethnic minorities in clinical and other research studies, as the majority of outcome research studies do not include these subgroups.

• Lack of human and scientific capital: Methods for conducting outcomes research need to be developed, and there are limited trained researchers who can conduct outcomes research within the United States and abroad. Increased emphasis must be placed on training outcomes researches both nationally and internationally.

• Improper reporting of health related outcomes: Many hospitals/healthcare providers do not properly report outcomes creating bias in studies.

• Lack of interpretability of measures/incorporation into clinical practice: Clinicians must be educated about the usefulness of outcome measures, and outcome measures must be easy to include into daily practice.

• Unproven cost-effectiveness: Ironically, no one has measured whether spending money on outcome studies improves medical care, compared to funding research directly on the underlying conditions.