Electronic Linkage for Inflammatory Bowel Disease to Deliver Joint Access to Health Reports (ELIJAH)

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.

Care as usual plus 8 weekly ELIJAH health reports shared with the participant and General Practitioner for 6 months i.e.: My history, My plan, My Update delivered via post or by email (dependant on participant preference) in addition to care as usual.

Care as usual dictated by disease pathway of diagnosed inflammatory bowel disease i.e.; access to out-patient and in-patient hospital based care and community health resources via General Practitioner.

Participants were sent 3 sets of individualised, educationally enriched health reports about their diagnosed inflammatory bowel disease history, care plan and updates on their recent health status, results or encounters with health care services.

Safety: Number of participants with adverse events as assessed by access to the primary and secondary care participant data and collated via the ELIJAH Adverse Event screening form.

The number of participants with adverse events leading to a hospital admission or otherwise, threatening the health and well being of participating patients and reported to a health professional graded according to causality and seriousness of event. Access to General Practitioner and secondary care hospital based data for the participant in paper and electronic form will provide details of relevant primary and secondary care attendances, acute admissions and outpatient appointments.

Effectiveness: The cost of National Health Services resources used by participants in primary and secondary care.

The indirect costs of participant use of National Health services across primary and secondary care including General Practitioner visits, in-patient stays, operations, outpatient visits, investigations, Accident and Emergency attendances, open access service use and medication use will be compared. A direct cost of the intervention i.e.: the time taken by the clinician to formulate the elements of the ELIJAH intervention will be assessed. Both indirect and direct costs will be formulated via a comparrison of the PSSRU and National Schedule of reference Costs.

Patient- centeredness: Participant satisfaction with disease related care provided as assessed by Inflammatory Bowel Disease Service Satisfaction Questionnaire (ISSQ, derived from the GESQ).

Patient- centeredness: Participant satisfaction with disease related care provided as assessed by EQ5D.

Timeliness: The average elapsed time between the onset of a new inflammatory bowel disease related issue needing a healthcare intervention for a participant, and the start of that care.

Recognition of participants noting increased symptoms , the time of reporting symptoms and response time of health professionals to respond.

Equity: Whether the social status of participants affects the size of differences in the other four outcome criteria.

The number of participants designated by deprivation score (more or less deprived) using analysis of postcodes.

Inclusion Criteria: Clinical diagnosis of Inflammatory Bowel Disease, specifically Ulcerative Colitis or Crohn's Disease. Aged 18 to 90 years. Under the care of Consultant Gastroenterologists. Patient registered with collaborating General Practitioner practice. Exclusion Criteria: a. Participants who are unable to comprehend the study.

De-identified individual participant data for the primary and secondary outcomes data will be made available upon completion of reporting of the trial.

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