Module 1: # 1

CONSUMER PARTICIPATION FRAMEWORKCONSUMER PARTICIPATION FRAMEWORK

Start here!

1. Consumer Participation: What is it? Why do it?

- Shared definitions/

understanding - Shared principles - The Participation

Continuum - The Evidence

(Refer to Module One)

5. How will we know when we get there?: Monitoring & Evaluation

- Approaches to Evaluation

- Evaluation Checklist

(Refer to Module Five)

4. How will we get there?: Strategies & Techniques

- Implementing the Policy/ Vision

- Selecting Strategies - Comparing Strategies &

Techniques

(Refer to Module Four)

2. Where are we now?: Planning for Consumer Participation - Assessing present

conditions/experience

- Conducting an Audit – identifying strengths & gaps

(Refer to Module Two)

3. Where do we want to go?: Direction Setting

- Developing a Consumer Participation Policy

- Developing an Action/Strategy Plan

- Identifying Barriers and Challenges

(Refer to Module Three)

Consumer Participation Consumer Participation FrameworkFramework

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MODULE ONEMODULE ONECONSUMER PARTICIPATION: WHAT IS IT? CONSUMER PARTICIPATION: WHAT IS IT?

& WHY DO IT?& WHY DO IT?

WORKSHOP AIMS

(i) To stimulate discussion and debate about what consumer participation is, and identify the benefits to consumers and service providers.

(ii) To develop a shared understanding of definitions and a set of guiding principles for Consumer Participation.

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WHO ARE CONSUMERS?WHO ARE CONSUMERS? The term ‘consumer’ denotes both the individual and the collective

interest. It refers to consumers, consumer groups and community groups. It distinguishes them from professionals and others providing services.

The term ‘consumer’ can also refer to

those currently using services

potential users of services

their carers, family and support people

those who need care, but who are poorly provided for by the health and community support system.

Consumers vary in their backgrounds and opinions. They are not a homogeneous group. There is no single consumer view, but probably as many views as there are consumers. What they share is the direct experience of the health and community service systems.

Consumer is also used to convey the broader rights of citizens in using or potentially using services

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WHAT IS CONSUMER PARTICIPATION?WHAT IS CONSUMER PARTICIPATION?

The term ‘consumer participation’ is open to considerable interpretation. Consumer participation can be described as the process of involving consumers in decision making about their own health care, health and community services planning, policy development, setting priorities and addressing quality issues in the delivery of health and community support services.

The term ‘participation’ usually implies sharing, not only of information and opinion, but also of decision making power. Real participation means joint problem solving, joint decision making, joint responsibility.

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WHAT IS CONSUMER PARTICIPATION?WHAT IS CONSUMER PARTICIPATION?

Consumer participation can occur across many levels within organisations/services:participation in treatment and careconsumers employed by services as

consultants and advocatesparticipation in service delivery and

evaluationparticipation in policy and planningparticipation in education and trainingparticipation in staff recruitment

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THE PARTICIPATION CONTINUUMTHE PARTICIPATION CONTINUUM

Participation is best thought of as a continuum with various stages.

At one end of the continuum, the relationship between the consumer and the service is service/organisation led and centres on the communication of information.

It then progresses through the consultation stage with its joint consideration of issues, to true partnership (which includes the sharing of decision making) and ultimately to consumer/community control.

Information Consultation Partnership Control

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THE LADDER OF PARTICIPATIONTHE LADDER OF PARTICIPATIONDegree Participants’

action Illustrative mode

High Have control Organisation asks community to identify the problem and to make all the key decisions on goals and means. Willing to help community at each step to accomplish goals.

Have delegated Organisation identifies and presents a problem to the community, defines the limits and asks community to make a series of decisions, which can be embodied in a plan it can accept.

Plan jointly Organisation presents a tentative plan subject to change and open to change from those affected. Expects to change plan at least slightly and perhaps more subsequently.

Advise Organisation presents a plan and invites questions. Prepared to modify plan only if absolutely necessary.

Are consulted Organisation tries to promote a plan. Seeks to develop support to facilitate acceptance or give sufficient sanction to plan so administrative compliance can be expected.

Low Receive information

Organisation makes a plan and announces it. Community is convened for informational purposes. Compliance is expected.

None Community not involved.

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What is the evidence supporting consumer participation in health?What is the evidence supporting consumer participation in health?

Consumer Participation in Individual Care Active consumer participation in decision-making in individual care leads to

improvements in health outcomes

Access to quality information facilitates decision-making and supports an active role for consumers managing their own health

Consumer Participation in Health Services Active consumer participation leads to more accessible and effective health

services

Effective consumer participation in quality improvement and service development activities in health services is achieved through the adoption of a range of methods

Effective consumer participation uses methods that facilitate participation by those traditionally marginalised by mainstream health services

Consumer Participation in The Health System Active involvement of consumers at all levels of the development, implementation

and evaluation of health strategies and programs is integral to their success.

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Research shows that consumer involvement is strongly associated with good outcomes for primary health services

It increases the level of satisfaction with services

It builds an environment where individuals are more likely to take responsibility for their own health

It helps make service planning decisions that reflect the needs and wishes of the community

It increases the sense of ownership of services

Direct participation is more efficient and effective as a means of providing understanding about local needs and issues than indirect or secondary sources

What are the direct benefits to consumers &What are the direct benefits to consumers & service providers?service providers?

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Consumer Participation improves service quality, particularly in regard to access and service responsiveness

It helps to market the service

It helps to attract people interested in working with and supporting services

It injects innovation and creativity into service planning and delivery

It increases the level of social capital in the community.

What are the direct benefits to consumers &What are the direct benefits to consumers & service providers? (cont’d)service providers? (cont’d)

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WHERE TO FROM HERE?WHERE TO FROM HERE?

WHERE CAN WE DIRECT OUR FUTURE WHERE CAN WE DIRECT OUR FUTURE EFFORTS?EFFORTS?

WHAT COULD BE OUR NEXT STEP?WHAT COULD BE OUR NEXT STEP?

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MODULE TWOMODULE TWOWHERE ARE WE NOW? - PLANNING WHERE ARE WE NOW? - PLANNING

FOR CONSUMER PARTICIPATIONFOR CONSUMER PARTICIPATION

WORKSHOP AIMS

(i) To provide participants with an opportunity to discuss their agency’s present conditions/experience with Consumer Participation

(ii) To undertake an Audit of strengths, gaps and limitations.

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PLANNING FOR CONSUMER PLANNING FOR CONSUMER PARTICIPATIONPARTICIPATION

Planning for Consumer Participation is no different from planning for other activities.

Planning is a continuous, systematic and formalised method of determining:

Where we are now

to

Where we want to go

to

How we are going to get there

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THE PROCESSTHE PROCESS

A key part of the planning process is to assess our organisation’s capacity for change, and in particular, attitudes to consumer participation that exist within the organisation.

Planning for participation can help with the implementation of appropriate strategies for our organisation’s circumstances and the consumers with whom we work.

This self assessment stage sets the foundation for our consumer participation plans.

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DECIDING ON AGREED PRIORITIESDECIDING ON AGREED PRIORITIES

Where could our organisation/service direct its future efforts?

What could be our next steps?

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AUDIT TOOLSAUDIT TOOLSFive Tools are included in the Kit to choose from:

1. Organisational Capacity Assessment - This Tool enables an organisation to audit its current consumer participation focus.

2. Consumer and Carer Organisational Checklist - This Tool provides a quick overview of the current achievements of the organisation with respect to the participation of consumers and carers in service delivery, planning and management.

3. Attributes of a Consumer Focused Service Checklist – This Tool is designed as a checklist for service providers who undertake consumer assessment/care planning activities, to determine how consumer focused the service is.

4. Primary Health Care Assessment Tool - This Tool is designed to assess levels of consumer and carer participation in health services in the primary care sector.

5. Community and Consumer Participation Audit Tool for Hospitals - This Tool was designed by the National Resource Centre for Consumer Participation in Health for hospital staff to gain an indication of the level of commitment to community and consumer participation in their hospitals.

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AUDIT OUTCOMESAUDIT OUTCOMES

The Audit findings can be analysed to determine where we are currently positioned with regard to commitment to and activity in consumer participation.

The results can be used to identify

strengths

gaps

limitations

We can then prioritise where our efforts need to be directed to review or develop a Consumer Participation Policy and our Action/Strategy Plan for consumer participation.

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MODULE THREEMODULE THREEWHERE DO WE WANT TO GO? WHERE DO WE WANT TO GO?

DIRECTION SETTINGDIRECTION SETTING

WORKSHOP AIMS

(i) To provide participants with an overview of why developing a Policy and Action Plan for Consumer Participation is an essential criterion for demonstrating a commitment to and having a direction for Consumer Participation.

(ii) To provide a forum for participants to identify any challenges/barriers to developing a Policy and Action Plan and to jointly develop some strategies to address them.

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THE BENEFITS OF A CONSUMER THE BENEFITS OF A CONSUMER PARTICIPATION POLICYPARTICIPATION POLICY

It ensures processes and strategies are put in place that make consumer participation happen, rather than just talked about.

The process of documenting a policy is educative for Boards of Management/Councillors/Managers/Staff and Consumers

It provides an easy point of reference for inquiries from community members/consumers about becoming involved with our agency/service.

It provides an organisational context to support greater consumer participation and guide the development of multiple strategies across the organisation to increase the capacity as well as to foster consumer involvement.

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What could a community/consumer participation policy contain?

Principles

Purpose

Who is responsible for implementing?

Organisation’s position in relation to participation in:

- Strategic Planning

- Service planning

- Service delivery

- Health decision-making

- Service evaluation

How will it be evaluated? – what measures & indicators? How will implementation be

monitored?

When will it be reviewed?

Implementation Review & Evaluation Purpose, Principles, Policy

Position

What resources will be allocated?

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Examples of principles that could be used in a policy include: All people have the right to participate in debate and decision

making about decisions that affect their daily lives and about their own care

Community/consumer participation processes and strategies are part of the core business of our service, not optional extras

The community is diverse, so our service is committed to policies and processes that are inclusive and that recognize and value difference

Our organisation seeks to know and understand our community by building and maintaining comprehensive knowledge about the local community

Our service actively seeks consumer and community views to inform planning and decision making about services

Information is essential to participation, so our service provides accessible information to our communities about processes and services

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An Action/Strategy PlanAn Action/Strategy Plan

A Consumer Participation Action/Strategy Plan should encompass:

Our goals/vision for consumer participation

Our objectives

A description of the issues/gaps we are addressing (as determined by the work we have done in assessing our present experience and conducting an Audit (Refer to Module 2)

The Actions (steps) we will be undertaking to address the issues/gaps

Strategies/Techniques we have chosen (Refer to Module 4: Selecting Appropriate Strategies)

Timelines for completion of each Action

Budget and personnel required

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MODULE FOURMODULE FOURHOW WILL WE GET THERE? -HOW WILL WE GET THERE? -STRATEGIES & TECHNIQUESSTRATEGIES & TECHNIQUES

WORKSHOP AIMS

(i) To explore the different roles/responsibilities for different levels and staff within the organisation for implementing the organisation’s Consumer Participation Policy.

(ii) To explore the vast array of strategies available and discuss the most appropriate methods for particular situations.

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IMPLEMENTING THE POLICY/VISIONIMPLEMENTING THE POLICY/VISION

- Different Roles for Different Levels/Staff -

Governing Body: Provides leadership by establishing the mission, strategic objectives, goals and policy parameters

Managers: Responsible for resource utilisation and staff resources to implement the policy/vision for Consumer Participation

Staff: Facilitate the processes for participation

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DIFFERENT APPROACHESDIFFERENT APPROACHES

There is a vast array of approaches/processes to consumer participation

Importantly there is no ‘best way’ - only principles and practice

Each organisation requires its own tailor made solutions/strategy plan

The level to which we want to engage consumers (as set out in our Policy and Action Plan) will determine the methods used for participation

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MODULE FIVEMODULE FIVEHOW WILL WE KNOW WHEN WE GET THERE? -HOW WILL WE KNOW WHEN WE GET THERE? -

MONITORING & EVALUATIONMONITORING & EVALUATION

WORKSHOP AIMS

(i) To provide participants with an opportunity to discuss their agency’s experience with evaluation of its consumer participation activities.

(ii) To explore evaluation approaches and the development of an agreed strategy for further evaluation efforts/activities

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WHAT IS EVALUATION?WHAT IS EVALUATION?Evaluation of consumer participation is a cyclical process.

It starts at the point that we decide as an organisation to plan our involvement in supporting participation.

It involves making judgments about the worth and appropriateness of our strategies for participation and reaching conclusions that will inform future practice and planning.

Indicators need to be determined during the planning phase and success can be measured against these indicators in the monitoring and evaluation phase.

Evaluation involves a process of reflection on what worked and what did not work and using this information in order to make improvements for the future.

Evaluation also enables us to account for the resources committed to participation and establish the case for future resource allocation.

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EVALUATIVE QUESTIONSEVALUATIVE QUESTIONS

Ideally, evaluative questions should be asked along the way so that we are identifying and addressing issues as we go.

How can we tell if the processes used are working?

If we are clear about the purpose for seeking consumer input and who we are trying to involve, then evaluation questions become much clearer.

How have consumers become involved?

What do consumers say about their experience of being involved?

What have we learnt so far and what needs to be changed to improve our Participation processes?

What changes have been implemented as a result of consumer participation and consumer-staff collaboration?

Have the changes consumers would like to see been implemented?

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TWO APPROACHES TO EVALUATIONTWO APPROACHES TO EVALUATION

OPEN INQUIRY

&

AUDIT REVIEW

These two approaches are not mutually exclusive and the limitation of each can be mediated to an extent by adopting some of the elements of the other approach.