Inflammatory Bowel Diseases Clinical Trial
Official title:
Electronic Linkage for Inflammatory Bowel Disease to Deliver Joint Access to Health Reports
This study evaluated the extent to which a shared health record facilitated better
communication, increase individual responsibility for health care and reduce demand for
health resources.
The study made individualised reports available to patients and General Practitioners and
gave much more detail about participants chronic disease and treatments, and evaluated its
effectiveness in a randomised controlled feasibility trial.
One third of patients received care as usual, two thirds of patients received the
intervention.
Chronic illness is a major cause of health problems. Self-management programmes can improve
care and reduce healthcare resource use, but rely on well educated patients who are able to
take responsibility for their care, have effective communication with health care providers,
and easy access to appropriately triaged services.
This study utilised Inflammatory Bowel Disease as an exemplar of chronic disease management.
To inform the intervention the investigators held a focus group with patients who told the
investigators about their concerns relating to education, care planning and communication
about their condition. The participants expressed a preference for individualised
information about their care, and plans of what to do if symptoms increase.
The investigators departmental electronic patient record (GeneCIS), was extended to provide
personalised, educationally enriched information to each participant about their
Inflammatory Bowel Disease. The investigators customised GeneCIS to develop output reports
i.e.: "My History", "My plan" and "My Update", that attach specific educational information
to the detailed, structured clinical data held on the system, and shared this with
participants and their General Practitioner.
;
Allocation: Randomized, Endpoint Classification: Safety/Efficacy Study, Intervention Model: Parallel Assignment, Masking: Single Blind (Outcomes Assessor), Primary Purpose: Supportive Care
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