Sustainability in health care by allocating resources effectively (SHARE) 4: exploring opportunities and methods for consumer engagement in resource allocation in a local healthcare setting

Background This is the fourth in a series of papers reporting a program of Sustainability in Health care by Allocating Resources Effectively (SHARE) in a local healthcare setting. Healthcare decision-makers have sought to improve the effectiveness and efficiency of services through removal or restriction of practices that are unsafe or of little benefit, often referred to as ‘disinvestment’. A systematic, integrated, evidence-based program for disinvestment was being established within a large Australian health service network. Consumer engagement was acknowledged as integral to this process. This paper reports the process of developing a model to integrate consumer views and preferences into an organisation-wide approach to resource allocation. Methods A literature search was conducted and interviews and workshops were undertaken with health service consumers and staff. Findings were drafted into a model for consumer engagement in resource allocation which was workshopped and refined. Results Although consumer engagement is increasingly becoming a requirement of publicly-funded health services and documented in standards and policies, participation in organisational decision-making is not widespread. Several consistent messages for consumer engagement in this context emerged from the literature and consumer responses. Opportunities, settings and activities for consumer engagement through communication, consultation and participation were identified within the resource allocation process. Sources of information regarding consumer values and perspectives in publications and locally-collected data, and methods to use them in health service decision-making, were identified. A model bringing these elements together was developed. Conclusion The proposed model presents potential opportunities and activities for consumer engagement in the context of resource allocation. Electronic supplementary material The online version of this article (doi:10.1186/s12913-017-2212-5) contains supplementary material, which is available to authorized users.

1. Start with the most recent guideline or review and apply standard appraisal criteria.
2. If found to be of high quality, cross check to ensure references from all other synthesised research are included and check for consistency of findings.
3. If not high quality, appraise next most recent guideline or review, and repeat process.
4. Check that all desired settings and outcomes are covered. If not, look for these in other available publications and follow same process 5. If there are inconsistent findings across the existing guidelines and reviews, investigate the possibility of synthesis of the information or whether a new systematic review is required.
Step 3: Identify need for additional SRs.
1. Map available evidence to specific decision-making settings (as per Table A1.1). Table A1.2). Determine if a good quality but out-of-date SR needs updating, or if a new SR needs to be conducted where no good quality SR was found.

Stage 2
Update existing high quality reviews and/or undertake new SR if required.

Sources
Searches were undertaken in relevant guideline websites, websites of synthesised evidence, websites of peak health consumer organisations, and government health department websites, and in healthcare databases. Checking of reference lists of article and reports, and links on websites, was also done.

Websites
A number of generic guideline clearinghouses and websites of guideline developers have been commonly used by CCE. Additional sources of consumer websites were identified from resource links from the websites of peak health consumer organisations, government health department websites, and by asking experienced consumer advocates. The following websites were searched:

Guidelines websites Links
National

Health databases
The following medical databases were searched: All EBM (including Cochrane Database of Systematic Reviews, DARE, CENTRAL, and ACP Journal Club), Medline(R) 1950 to present with daily updates and Medline(R) in-process and other non-indexed citations, CINAHL, and EMBASE.

Search terms
Search string for websites consists of the following combination of a "consumer" term and an "engagement" term. Where website search engines could not support truncation all terms were entered in full.

Consumer terms Engagement terms
Consumer, Consumers For searching the medical databases, an initial scoping exercise identified that using a comprehensive search using keywords and MeSH headings returned a very high number of articles that would be impractical to sift through. MeSH headings were used to restrict the number of retrieved results. "Consumer participation" and "health planning" MeSH headings were used to capture most of the relevant literature. Because the All EBM database does not have MeSH headings, the search terms used for websites as listed previously was used to obtain relevant articles.

Inclusion and exclusion criteria
Inclusion and exclusion criteria were established a priori and were applied by a single reviewer.

Inclusion Exclusion Population
There are two populations that are targeted:  Consumers, the public, patients, or the community  Health service staff and groups who are decision-makers at an organisation-wide level or multi-departmental level, particularly managers and senior staff Health service staff or committees who are making decisions at a single departmental level or lower level.

Intervention / indicator
Consumer or community engagement strategies for organisationwide or multi-departmental decision-making. The documents must provide information on one or both of the following:  Implementation methods  Evaluation methods and measures used for the consumer engagement strategies for organisation-wide decision-making.
Consumer engagement strategies aimed at health or medical research projects.
Consumer engagements strategies aimed at specific disease group services (eg. cancer services).
Documents not providing details on implementation or evaluation methods.

Comparison / control
Any consumer engagement strategy.
No consumer engagement.

Outcomes
How consumers contributed to the decision-making process.
Methods of successful implementation of consumer engagement.
Methods for evaluating the consumer engagement process.
Methods for reporting to consumers how their input contributed to the decision-making process.

Setting
Health service setting.
Organisation-wide or multi-departmental decision-making processes, consultations, committees, or working groups. Situations may include clinical safety committees, consumer advisory committees, or health technology and clinical practice committees.
Focused only on specific disciplines (eg. mental health) or for specific projects (eg. research projects).

Data collection and analysis
All quality appraisals were conducted by a single reviewer in consultation with colleagues as required using CCE templates appropriate to the study design. An initial scoping exercise identified a variety of evidence sources for consumer engagement, such as evidence based guidelines, SRs, RCTs, and case studies. For this appraisal, there are a variety of situations where consumer engagement may occur and there may be multiple consumer engagement techniques that may have been used for a specific situation. A two-staged approach was undertaken where synthesised evidence was critically appraised, and gaps in the evidence identified, as stated in Methods 1.
If there are gaps in the evidence, an update of existing high quality reviews can be done and/or a new SR undertaken.

Interviews and workshops
Semi-structured discussions with Consumer Working Group Aim: To identify potential opportunities and methods for consumer participation and sources of consumer information. Inclusion criteria: Consumer representatives with experience in organisation-wide decision-making related to resource allocation. Sampling: Convenience sampling was used. Three consumer representatives who met the inclusion criteria were known to the project team (as members of committees overseeing introduction of new TCPs and development of policies and procedures), two of them were on the SHARE Steering Committee. Approach: The three representatives were approached personally and invited to participate. Design: Workshop 1 addressed the question: How can we capture consumer perspectives and include in decisions related to organisationwide systems and processes? Prompts for discussion included Methods of involvement: Who? How? Use of research literature and local/other data: What? Where? How? Who else to talk to? and Things we haven't thought of? Workshop 2 considered and refined the findings of Workshop 1 and added further detail. Data collection: Group discussions were held at meetings convened for this purpose. Project team members took notes. Respondent validation: Drafts were sent to the interviewees for clarification, comment and/or amendment as required. Analysis: Responses were collated and added to findings from the other sources which were then analysed thematically by content analysis.
Response rate: All members of the Consumer Working Group participated in both workshops.

Representativeness of sample:
The consumer representatives were experienced in health service decision-making and familiar with organisational systems and processes.

Semi-structured interviews with staff responsible for consumer-related activities
Aim: To identify consumer-related activities within the organisation Inclusion criteria: Staff with responsibility for consumer-related activities Approach: Invitations for interview were sent to the Monash Health Quality Manager and Consumer Engagement Manager.
Interview schedule: What consumer-related activities occur within the organisation? What are your thoughts on findings from Consumer Working Group and interviews with Monash Health staff? Who else to talk to? Things we haven't thought of? Data collection: Individual interviews were held at meetings convened for this purpose in the interviewee's office. One member of the project team was both interviewer and note taker. Respondent validation: Drafts were sent to the interviewees for clarification, comment and/or amendment as required. Analysis: Responses were collated and added to findings from the other sources which were then analysed thematically by content analysis. Responses were summarised by emergent themes and presented in detailed reports used for project decision-making and planning.
Response rate: Both invitees participated.

Representativeness of sample:
The interviewees were the senior managers responsible for consumer participation in the organisation.

Structured workshop with Community Advisory Committee
Aims: To identify current consumer engagement activities, barriers and enablers to effective participation in these situations and the needs of consumers in order to contribute effectively; to identify sources of consumer information and data and how these sources can be used to drive decision-making; and to seek feedback on a draft model for consumer engagement in generic health service decision-making Inclusion criteria: The Community Advisory Committee is a legislated advisory body to the health service Board providing consumer, carer and community perspectives. This group provides a consultation service to health service staff engaging in consumer-related activities. Approach: A request for consultation was completed. A workshop was held at a meeting convened for this purpose. Design: The project team delivered a presentation that included the background and aims of SHARE, potential decision-making settings identified in earlier SHARE work, and findings from the literature review, interviews and consultation with staff and consumers regarding current and potential consumer participation in decision-making at Monash Health. This was followed by a structured discussion on the following topics:  Committees and Working Parties: What would consumers need to contribute effectively? What are the barriers and enablers to effective participation? Other thoughts?  Consultation: Are there particular areas we should focus on? What would consumers need to contribute effectively? What are the barriers and enablers to effective participation? Other thoughts?  Using our consumer data: Sources we have identified. Are there others? Should there be others? How can we use this information to drive decision-making? How should consumers be involved in this process?  Using our other data: Sources we have identified. How can we use this information to drive decision-making? How should consumers be involved in this process?  Consumer literature: Suggestions. How can we use this information to drive decision-making? How should consumers be involved in this process?  Is there anything else we have missed? Data collection: Project staff took notes. Analysis: Responses were collated and added to findings from the other sources which were then analysed thematically by content analysis. Response rate: 6 of the 14 committee members attended the workshop