Consumer informatics: Development of a model for documenting and maintaining family medical records

The purpose of this study was to develop a model to guide families in documenting complete health information. Design issues addressed include format, size, arrangement, content, and other elements to improve effectiveness. This model will help patients, parents, and other consumers to maintain their medical records.

The review of literature indicated medical outcomes improve when patients become partners in medical decision-making. Empowering patients with information and assigning responsibility for documentation to them enhances this participation.

Members of the Grand Council for the International Federation of Health Record Organizations and past-presidents of the American Health Information Management Association formed a panel of experts. Three Delphi rounds were facilitated by questionnaires asking the panel to evaluate the importance of choices for each design area. Respondents indicated “not important”, “somewhat important”, or “very important” on a Likert-type scale. Responses were tallied for each round resulting in a ranking of the choices based on total score for round 2 and mean, score for round 3. Items with less than a 2.0 mean score at the conclusion of round 2 were eliminated from consideration for round 3. Participants added design items and made many comments. These items were categorized and used to design questionnaires for rounds two and three.

At the conclusion of the third round, consensus was reached. The best design for a family medical record was defined in terms of format, size, arrangement, and content.

The best format is both electronic and paper. The paper format should be a 3-ring binder and include a computer disk with screens that match the paper forms. A separate record should be developed for each family member. The record should be divided into sections and include entries from providers as well as patients. Record content should include family and personal health history, information on the current health status and records of all healthcare services. Reminders for preventive and routine services should be included. Forms in the record should be designed so users can easily understand how to make entries and locate information.