Consumer Participation Framework

1. Consumer Participation Framework CONSUMER PARTICIPATION FRAMEWORK 1

2. MODULE ONECONSUMER PARTICIPATION: WHAT IS 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. Module 1: # 2

3. 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 Module 1: # 3

4. 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. Module 1: # 4

5. WHAT IS CONSUMER PARTICIPATION? • Consumer participation can occur across many levels within organisations/services: • § participation in treatment and care • § consumers employed by services as consultants and advocates • § participation in service delivery and evaluation • § participation in policy and planning • § participation in education and training • § participation in staff recruitment Module 1: # 5

6. THE 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 Module 1: # 6

7. THE LADDER OF PARTICIPATION Module 1: # 7

8. 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. Module 1: # 8

9. What are the direct benefits to consumers & service providers? • 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 Module 1: # 9

10. What are the direct benefits to consumers & service providers? (cont’d) • 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. Module 1: # 10

11. WHERE TO FROM HERE? • WHERE CAN WE DIRECT OUR FUTURE EFFORTS? • WHAT COULD BE OUR NEXT STEP? Module 1: # 11

12. MODULE TWOWHERE ARE WE NOW? - PLANNING FOR 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. Module 2: # 12

13. PLANNING FOR CONSUMER PARTICIPATION • 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 Module 2: # 13

14. THE 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. Module 2: # 14

15. DECIDING ON AGREED PRIORITIES • Where could our organisation/service direct its future efforts? • What could be our next steps? Module 2: # 15

16. AUDIT TOOLS Five 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. Module 2: # 16

17. AUDIT 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. Module 2: # 17

18. MODULE THREEWHERE DO WE WANT TO GO? DIRECTION 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. Module 3: # 18

19. THE BENEFITS OF A CONSUMER PARTICIPATION POLICY ØIt ensures processes and strategies are put in place that make consumer participation happen, rather than just talked about. ØThe process of documenting a policy is educative for Boards of Management/Councillors/Managers/Staff and Consumers ØIt provides an easy point of reference for inquiries from community members/consumers about becoming involved with our agency/service. ØIt 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. Module 3: # 19

20. What could a community/consumer participation policy contain? Module 3: # 20

21. 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 Module 3: # 21

22. An Action/Strategy Plan • A Consumer Participation Action/Strategy Plan should encompass: • p Our goals/vision for consumer participation • p Our objectives • p 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) • p The Actions (steps) we will be undertaking to address the issues/gaps • p Strategies/Techniques we have chosen (Refer to Module 4: Selecting Appropriate Strategies) • p Timelines for completion of each Action • p Budget and personnel required Module 3: # 22

23. MODULE FOURHOW WILL WE GET THERE? -STRATEGIES & 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. Module 4: # 23

24. IMPLEMENTING 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 Module 4: # 24

25. DIFFERENT 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 Module 4: # 25

26. MODULE FIVEHOW WILL WE KNOW WHEN WE GET THERE? -MONITORING & 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 Module 5: # 26

27. WHAT IS EVALUATION? Ø Evaluation of consumer participation is a cyclical process. Ø It starts at the point that we decide as an organisation to plan our involvement in supporting participation. Ø It involves making judgments about the worth and appropriateness of our strategies for participation and reaching conclusions that will inform future practice and planning. Ø Indicators need to be determined during the planning phase and success can be measured against these indicators in the monitoring and evaluation phase. Ø 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. Ø Evaluation also enables us to account for the resources committed to participation and establish the case for future resource allocation. Module 5: # 27

28. EVALUATIVE 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? Module 5: # 28

29. TWO 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. Module 5: # 29