Web-Based Multi-Criteria Decision Support in the Community and Clinic: Shared Management of Inflammatory Bowel Disease (IBD)
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Abstract
Background
The call for greater patient involvement in decision making, attention to individual preferences, Patient Reported Outcome Measures, and Quality-of-Life-considerations, is coinciding with a growing demand for ‘translation’ of research evidence into patient-centred practice. New technology can facilitate both and help address the ever-increasing pressure on health service resources and clinician time e.g. in the management of chronic diseases like IBD. Crohn's and Ulcerative Colitis are complex and preference-sensitive, with high public health impact due to rising incidence and costs.
Objective
To explore the feasibility, effects, and resource implications of providing web-based Multi-Criteria Decision Analysis (MCDA)-based decision support in cross-disciplinary IBD settings. The main focus is on home-based support to patients prior to their outpatient consultation and its contribution to the quality of the clinical discussion and decision reached.
Methods
A unique ID/password connects the patient to the MCDA-based decision support system which separates the evidence base for the decision (performance rates for each option on each patient-important criterion) with the patient’s importance weights for those outcomes and attributes. The decision tool provides a provisional 'opinion' based on their transparent integration, not as a medical opinion per se but as one produced by the involved health professionals. The unique ID/password includes the patient in any internal referral process between gastroenterologist and surgeon.
Mixed methods (interviews and weblog analysis of time spent on elements of the decision support/links) are employed in related and concurrent field work at St. Mark’s Hospital, London (involving the IBD Specialist Nurses’ advice line), and Royal Prince Alfred Hospital, Sydney. The primary outcome is decision quality as measured by the ‘MyDecisionQuality’ (MDQ) instrument. A web-based survey posted on the Danish IBD patient organisation site introduced the Danish version of MDQ. ‘Satisfaction with Decision’ is also elicited.
In MDQ a patient’s importance weights over 8 criteria for a good decision are entered at home prior to their consultation and their ratings after it, providing a dually-personalised measure of decision quality. When MDQ is filled out by the clinician, a decomposable measure of concordance is produced, along with a calculation of the incremental gains in decision quality achievable for each criterion. The documentation (graphic picture of the MCDA output screen) can be saved/printed, and act as prescriptive guidance for future (shared) decisions.
Results
The baselines are underway and interventions scheduled. A Danish study involving a national IBD patient organisation found the web-based approach outperformed written invitations amongst initial 39 respondents.
Conclusions
In spite of increasingly time-pressured clinicians in both settings since project launch, feasibility issues have been overcome within an action-oriented approach. In addition to setting-specific results, insights into national differences of patient web-literacy, IBD management/reimbursement, and preferences are expected. The findings will feed into a protocol for translation and transfer into the Danish context as part of a Ph.D. project at The University of Southern Denmark (SDU). The studies have ethics approval in the respective countries, are undertaken in collaboration with Sydney University School of Public Health, and funded by The Region of Southern Denmark, SDU, and Helsefonden.dk.
The call for greater patient involvement in decision making, attention to individual preferences, Patient Reported Outcome Measures, and Quality-of-Life-considerations, is coinciding with a growing demand for ‘translation’ of research evidence into patient-centred practice. New technology can facilitate both and help address the ever-increasing pressure on health service resources and clinician time e.g. in the management of chronic diseases like IBD. Crohn's and Ulcerative Colitis are complex and preference-sensitive, with high public health impact due to rising incidence and costs.
Objective
To explore the feasibility, effects, and resource implications of providing web-based Multi-Criteria Decision Analysis (MCDA)-based decision support in cross-disciplinary IBD settings. The main focus is on home-based support to patients prior to their outpatient consultation and its contribution to the quality of the clinical discussion and decision reached.
Methods
A unique ID/password connects the patient to the MCDA-based decision support system which separates the evidence base for the decision (performance rates for each option on each patient-important criterion) with the patient’s importance weights for those outcomes and attributes. The decision tool provides a provisional 'opinion' based on their transparent integration, not as a medical opinion per se but as one produced by the involved health professionals. The unique ID/password includes the patient in any internal referral process between gastroenterologist and surgeon.
Mixed methods (interviews and weblog analysis of time spent on elements of the decision support/links) are employed in related and concurrent field work at St. Mark’s Hospital, London (involving the IBD Specialist Nurses’ advice line), and Royal Prince Alfred Hospital, Sydney. The primary outcome is decision quality as measured by the ‘MyDecisionQuality’ (MDQ) instrument. A web-based survey posted on the Danish IBD patient organisation site introduced the Danish version of MDQ. ‘Satisfaction with Decision’ is also elicited.
In MDQ a patient’s importance weights over 8 criteria for a good decision are entered at home prior to their consultation and their ratings after it, providing a dually-personalised measure of decision quality. When MDQ is filled out by the clinician, a decomposable measure of concordance is produced, along with a calculation of the incremental gains in decision quality achievable for each criterion. The documentation (graphic picture of the MCDA output screen) can be saved/printed, and act as prescriptive guidance for future (shared) decisions.
Results
The baselines are underway and interventions scheduled. A Danish study involving a national IBD patient organisation found the web-based approach outperformed written invitations amongst initial 39 respondents.
Conclusions
In spite of increasingly time-pressured clinicians in both settings since project launch, feasibility issues have been overcome within an action-oriented approach. In addition to setting-specific results, insights into national differences of patient web-literacy, IBD management/reimbursement, and preferences are expected. The findings will feed into a protocol for translation and transfer into the Danish context as part of a Ph.D. project at The University of Southern Denmark (SDU). The studies have ethics approval in the respective countries, are undertaken in collaboration with Sydney University School of Public Health, and funded by The Region of Southern Denmark, SDU, and Helsefonden.dk.
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