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

Phedra Dodds

Status: Completed

Conditions: Inflammatory Bowel Diseases

Treatments: Other: Health reports

Study type: Interventional

Funder types: Other

Identifiers

NCT02985476

40189

Details and patient eligibility

About

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.

Full description

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.

Enrollment: 61 patients

Sex: All

Ages: 18 to 90 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Clinical diagnosis of Inflammatory Bowel Disease, specifically Ulcerative Colitis or Crohn's Disease.
2. Aged 18 to 90 years.
3. Under the care of Consultant Gastroenterologists.
4. Patient registered with collaborating General Practitioner practice.

Exclusion criteria

a. Participants who are unable to comprehend the study.

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: Single Blind

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61 participants in 2 patient groups

Interventional

Active Comparator group

Description:

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.

Treatment:

Other: Health reports

Observational

No Intervention group

Description:

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.