Consumer, Carer and Community Participation and Engagement Policy

Consumer, Carer and Community Participation and Engagement Policy CONSUMER, CARER and COMMUNITY PARTICIPATION and ENGAGEMENT POLICY Version 1.1 February 2013 The National Call Centre Network Ltd trading as Healthdirect Australia

Contents Introduction... 3 Purpose... 3 Background... 3 Rationale... 3 Scope... 3 Principles... 4 Our policy... 5 Policy Implementation... 7 Engagement Interventions... 7 Current... 8 Proposed... 8 Evaluation Criteria... 9 References... 10 Appendix 1. Glossary of Terms... 11 2 P a g e

Introduction Purpose The purpose of this policy is to outline the approach, aims and objectives that Healthdirect Australia will adopt and all service providers will be required to use in order to achieve best practice consumer and community engagement. Background Healthdirect Australia is in a unique position as a national health provider to show leadership in consumer, carer and community participation. Effective consumer engagement is an important balance to the views of health professionals, service providers and government perspectives. It provides an opportunity for the views of the Australian public to inform the development of Healthdirect Australia services. A definition of consumer incorporates women, men, people from diverse cultural experiences, including Aboriginal and Torres Strait Islander people, social circumstances, sexual orientation, health and illness conditions. Healthdirect Australia is responsible for providing person-centred national telehealth and online services. And as a unique health service that links with health and community services across Australia, a commitment to consumer participation and community engagement in all aspects of our services will provide mechanisms and opportunities for users, callers, and key stakeholders to engage. Rationale This policy acknowledges that consumer engagement improves decision making, increases community satisfaction with services, is part of balanced decision-making, is a democratic right and brings into focus issues relevant to consumers that might not otherwise be heard. Best practice consumer engagement recognises the value of consumer experience and perspectives, enables participation by a range of consumers, recognises the importance of partnerships between stakeholders and healthcare stakeholders and develops effective communication strategies. Consumer participation and engagement brings a range of benefits including: 1 Scope National policy and program developments that reflect consumer views Health care that better meets consumer expectations Health services that are more likely to be accessible and effective Transparent decision making The opportunity for people traditionally marginalised by mainstream health services to participate Better health outcomes for consumers. This policy applies to the planning, development, implementation and management of all Healthdirect Australia services and associated service providers. The policy is applicable to all staff. It defines how consumer, carer and community participation is incorporated into service development, evaluation and improvement processes. 1 Submission on the Australian Commission on Safety and Quality in Health Care Consumer Engagement Strategy Consumers Health Forum of Australia, October 2008 3 P a g e

This policy will support the commitment and recognition of the importance of consumer participation in Healthdirect Australia services. It is aligned with the National Safety and Quality Health Service Standards-Standard 2-Partnering with Consumers. 2 Principles This policy is underpinned by nine principles of participation established by the Australian Commission on Safety and Quality in Healthcare in 2009. The principles are: 3 Principle Operation 1. Access A right to health care. Access is enhanced when the best and most appropriate care is provided to a patient or consumer, including using other facilities if needed. Being mindful of the whole of treatment needs of the patient, such as continuing treatment and out of hours services, also contributes to achieving the right of access. 2. Safety A right to safe and high quality care. Safety is addressed by being alert to patient or consumer needs, ensuring patients or consumers understand the treatment they are to receive and by participating in existing patient safety systems. 3. Respect A right to be shown respect, dignity and consideration. Respect means that all participants are mindful of a patient s or consumer s environment and background, and providing health care and advice that is appropriate to the patient s or consumer s needs. 4. Communication A right to be informed about services, treatment, options and costs in a clear and open way. Communication is enhanced if healthcare providers ensure that the patient or consumer understands the information being provided to them and by being alert to signs of confusion or misunderstanding by the patient or consumer and/or carers. Wherever practical, healthcare providers should make sure arrangements are made to meet patient or consumer language and communication needs. 5. Participation A right to be included in decisions and choices about care. Participation by patients in their health care is encouraged by engaging the patient or consumer and/or carers in discussions about treatment options. This includes informing patients and consumers of their right to refuse or withdraw consent at any time and inviting patients and consumers to consent for care or treatment that is experimental or part of teaching or research. Healthcare providers should be alert to a patient s or consumer s circumstances and consider these circumstances when providing care. 6. Privacy A right to privacy and confidentiality of provided information. Privacy requires that all participants be sensitive to the privacy needs of patients or consumers and by ensuring that patient information is only shared with other appropriate health professionals. 2 Australian Commission on Safety and Quality in Health Care-National Safety and Quality Health Service Standards, 2011. 3 Australian Commission on Safety and Quality in Health Care The Australian Charter of Healthcare Rights. A Guide for Health care Providers 2009 4 P a g e

7. Comment A right to comment on care and having concerns addressed. The opportunity to comment is important and enhanced by being attentive to the concerns of patients or consumers and/or carers and encouraging them to engage in two way communication. Patients, consumers and/or carers should be helped to articulate their concerns and be informed of comment options available to them. Healthcare providers should facilitate the efficient and equitable resolution of complaints by participating in organisational processes and should also look for improvements in health care provision as an outcome from interactions with patients, consumers, their carers and their families. Our policy The Healthdirect Australia Consumer, Carer and Community Participation and Engagement policy is that consumers and consumer groups are consulted at every possible opportunity. Current jurisdictional links with consumer, carer and community groups and links with the national consumer body, the Consumer s Health Forum of Australia, will form the foundation for the development of our strategy and future partnerships. Healthdirect Australia will create opportunities for members of the public to provide direct feedback about all services via telephone, email or mail and also in forums such as; focus groups and committees. Healthdirect Australia will encourage consumers and carers of diverse and special needs groups to participate in all aspects of service delivery through the development and implementation of specific programs to enhance access and equity. Healthdirect Australia will ensure that incident, complaint and feedback mechanisms enable people (regardless of race, age, gender, preferred language, income, disability, sensory impairment, social positioning or cultural background) to identify issues and raise concerns about our services. Healthdirect Australia will involve the Australian public in the development of marketing and communication materials about the service through focus groups and the evaluation of marketing campaigns and by responding to feedback about these materials from stakeholder groups. Healthdirect Australia will ensure clear written guidelines and protocols about consumer participation are developed with consumers and that confidentiality agreements are signed where appropriate. Healthdirect Australia will ensure that mechanisms for collecting data on user and caller feedback and consumer participation in all our services will be developed with consumers. Healthdirect Australia and service providers will ensure that all strategies and activities for engagement and participation are researched and evaluated and consumers, carers and communities, are supported to contribute at all levels of service delivery. Healthdirect Australia will evaluate and monitor the impact and progress of consumer engagement on service delivery. There are five levels of engagement of consumers and communities, for which Healthdirect Australia will strive. There are times when these different levels of engagement are useful and different objectives and strategies can be used for achieving engagement. These are summarised in the framework below. 4 4 Adapted for use by Healthdirect Australia from: Health Canada. Health Canada Community Engagement Strategy (2000) 5 P a g e

PURPOSE/LEVEL/TYPE WHEN USEFUL POSSIBLE STRATEGIES Inform and educate Low level of public involvement and influence Gather information Discuss Mid level of public involvement influence Engage Partner High level of public involvement and influence When factual information is needed to describe a policy/program/process When a decision has already been made When there s no opportunity to influence the outcome If the issue is simple In a crisis When the purpose is to listen When policy is being shaped When there is no firm commitment to do anything When a two-way information exchange is needed When people have an interest in an issue and are likely to be affected by the outcome When there s an opportunity to influence the outcome When Healthdirect Australia needs consumers/carers/community to talk to each other about complex issues When there s capacity to shape policies When there is an opportunity for shared agenda setting and open timeframes When options generated together will be respected When Healthdirect Australia wants to empower consumers/carers/community to manage the process When groups and citizens have accepted the challenge of developing solutions themselves When Healthdirect Australia is ready to be an enabler When there is agreement to implement the generated solutions Stakeholder engagement; regular newsletters and information about Healthdirect Australia progress Alerts Regular liaison with state and territory consumer/carer organisations Public meetings/forums Questionnaires/interviews Consumer/Carer consultations about specific issues related to service model and delivery Consumer /Carer focus groups on specific policy issues/marketing materials etc Expert panel of consumers and carers Consumer Advisory Group Consumer/carer Representation on working groups/cgag Deliberative approaches e.g. deliberative forum Engaging consumer organisations to undertake consumer research about specific or general areas related to telehealth services. Consumers are asked to identify areas of interest and work collaboratively with Healthdirect Australia to explore these issues in partnership. Current and future engagement strategies identified in this policy document are consistent with this framework. 6 P a g e

Policy Implementation Healthdirect Australia and all service providers are required to provide leadership within their organisations to enable the implementation of systems and a supporting framework for participation and engagement by our service users, their carers and families. Service providers are required to align their consumer, carer and community participation and engagement strategies with this policy. Exploration of consumer perspectives and experiences about Healthdirect Australia services, including engagement with non-government organisations and community groups has assisted with the development of specific strategies to improve access to diverse minority groups. These include Aboriginal people, the elderly, people living with a chronic illness, including mental illness, people with disabilities, people from culturally diverse backgrounds, socially, economically or geographically isolated communities and people with lower levels of health literacy. The creation of strong links and partnerships with national and state-based consumer organisations around priority areas will ensure that current shareholder relationships with consumer organisations are nurtured and regular liaison opportunities developed at State and Territory level. Healthdirect Australia will where possible, build capacity for comprehensive consumer, carer and community engagement, effective planning and implementation. This will include skill development and providing resources to ensure that consumers can engage and participate effectively. Specific items are to be budgeted for consumer engagement. These include recruitment and selection, training, travel, accommodation and sitting costs for consumers to engage, and funds to engage staff who have consumer expertise and the development of consumer engagement strategies A fundamental component of the implementation strategy is the continuous monitoring, review, recording and evaluation of all activities and strategies implemented for participation and engagement purposes. Such measure will be aimed at ensuring that such engagement and participation results in safe, effective, and appropriate, consumer focused, accessible and efficient services. 5 Engagement Interventions Healthdirect Australia regularly reviews engagement interventions and considers the identification and removal of barriers to participation by consumers, carers and community representatives in our services a primary function. Planning for future intervention development is continuous in order to achieve engagement and participation by consumers, carers and community members becoming routine; business as usual, in all Healthdirect Australia planning, processes, strategies and activities. Many strategies are in place to gain the perspectives of service users including; focus groups, complaint and feedback processes, customer satisfaction surveys, research projects and community consultative committees. Further strategies are in development as service delivery becomes more diverse and creative. However, consultation with potential service users to improve the quality, safety and appeal of our services is still required. 5 McNeil J. and Boyce, N. (1997) Quality and Outcome indicators for Acute Healthcare Services for The commonwealth Department of Human Services and Health. Canberra. Australia 7 P a g e

Current The following interventions and strategies are currently employed by Healthdirect Australia to achieve engagement and participation by consumers and communities. Strategy Online feedback portals Focus groups Consumer membership of Steering Committees Engagement with The Consumer Health Forum ACT Complaints / compliments Analysis with service providers re consumer feedback, etc Continuous research re consumer satisfaction-ultrafeedback Research on consumer digital usage and preferences Tobi eye tracking research Research into under representation of some groups in Healthdirect Australia service usage Purpose To elicit feedback from users to inform service improvements To consult with consumers, carers or community members for service design and improvement To elicit consumer opinion on projects being undertaken To ensure the company is cognisant of consumer issues To manage and learn from feedback and identify issues of concern to consumers To ensure service delivery improvements To assess consumer acceptability and satisfaction and identify improvement opportunities. To determine service development opportunities To assess the ways in which consumers use our web sites in order to make improvements and increase acceptability To determine with accuracy, the extent of under representation in order to tailor access and develop usage improvement strategies. Proposed The following interventions and strategies are proposed for implementation by Healthdirect Australia Strategy Purpose Timeline Commissioned research into consumer experience Liaison with consumer, carer and community organisations Marketing and promotional activities To undertake evidence based research method to record and analyse patient experiences of health and disease and present resulting data via our web sites that informs consumers To consult and better understand effective methods for engagement with diverse and minority groups. Mass education to raise awareness of possibilities for engagement and participation Commenced January 2013, to be completed August 2014 Commenced December 2012 Commenced January 2013 8 P a g e

Strategy Purpose Timeline Collaborative strategies with the Australian Commission on Safety and Quality in health care to increase health literacy across the country Orientation/Education strategies for Healthdirect Australia staff Consumer membership of the organisational Editorial Committee Consumer membership of the organisational digital Service Improvement and Development Committees (3) To improve consumer health literacy To improve Healthdirect Australia staff understanding of the importance of participation and engagement and how to achieve it To achieve a consumer perspective on performance and conformance of our digital services To achieve a consumer perspective on the content and future strategies for our specific digital services; HealthInsite, mindhealthconnect and Pregnancy, Birth and Baby. Commenced November 2012, to be completed June 2014 To commence February 2013 ongoing as each orientation program takes place Commenced January 2013. To be appointed by End March 2013 mhc SIDC consumer members (x2) appointed Dec 2012 Healthinsite by April 2013 PBB by April 2013 Evaluation Criteria Healthdirect Australia and service provider performance will be measured against the following evaluation criteria: 1. Commitment by organisation 1.1. Allocation of responsibility to a senior manager-leadership 1.2. Compliance with this policy in service development, and review 1.3. Evidence of budget allocation for engagement and participation strategies 1.4. Annual plan being in place for participation and engagement that is updated regularly 1.5. Evidence of commitment to orientation, training and education strategies for staff, consumers, carers and community members. 2. Participation in planning and decision making 2.1. Consumers, carers or community members participate on key governance and clinical governance structures 2.2. Participation and engagement in focus groups,forums and evaluation with Healthdirect Australia 2.3. Contribution to performance monitoring and quality improvement planning 3. Strategies are imbedded in service delivery to support participation and engagement by consumers 3.1. There are robust mechanisms for complaints and feedback to be provided by consumers 3.2. Contact with Healthdirect Australia is accessible to all service users. 3.3. Promotional activities are utilised to increase awareness of service users. 9 P a g e

References Australian Commission on Safety and Quality in Healthcare-National Safety and Quality Health Service Standards, 2011. Australian Commission on Safety and Quality in Healthcare The Australian Charter of Healthcare Rights. A Guide for Healthcare Providers 2009 Submission on the Australian Commission on Safety and Quality in Healthcare Consumer Engagement Strategy Consumers Health Forum of Australia, October 2008 Health Canada. Health Canada Community Engagement Strategy 2000 Victoria Department Health and Human Services Doing it with us not for us: Participation Policy 2006-2009 http://www.health.vic.gov.au/consumer, viewed on October 8, 2012 McNeil J. and Boyce, N. (1997) Quality and Outcome indicators for Acute Healthcare Services for The commonwealth Department of Human Services and Health. Canberra. Australia. 10 P a g e

Appendix 1. Glossary of Terms Clinical governance Community Consumers Engagement Framework Online/Digital Services Participation Service Provider Telehealth The framework through which healthcare organisations are accountable for continuously improving the quality of their services and safeguarding high standards of care by creating an environment in which excellence in clinical care will flourish. Community is made up of a series of subgroups that may include minority groups, special interest groups or groups within a particular geographical area. People who are current or potential users of health services. This includes children, women and men, people living with a disability, people from diverse cultural and religious experiences, socioeconomic status and social circumstances, sexual orientations, health and illness conditions. Refers to the range of activities used by governments, organisations and individuals to generate consumer input in or discussion about policy. A set of principles and long term goals that form the basis of making rules and guidelines, and give an overall direction to planning and development. Refers to Pregnancy, Birth and Babies, Healthinsite, and mindhealthconnect websites Participation occurs when consumers, carers and community members are meaningfully involved in decision-making about health policy and planning, care and treatment, and the wellbeing of themselves and the community. It is about having your say, thinking about why you believe in your views, and listening to the views and ideas of others. In working together, decisions may include a range of perspectives. An organisation responsible for the provision of Healthdirect Australia services The delivery of health care services, where distance is a critical factor, by all health care professionals using information and communication technologies for the exchange of valid information for diagnosis, treatment and prevention of disease and injuries, research and evaluation, and for the continuing education of health care providers, all in the interests of advancing the health of individuals and their communities. 11 P a g e