Patient and public engagement is where patients, relatives, carers and the public are actively involved in various aspects of the design, delivery and assessment of health services. It is also often referred to as consumer and community engagement.
Patient engagement has been brought into focus by recognising the need for greater patient empowerment in co-authoring their own future.
Patient empowerment puts the patient in the heart of services. It is about designing and delivering health and social care services in a way, which is inclusive and enables citizens to take control of their health care needs. The video above is worth a look if you need more background.
The European Network on Patient Empowerment (ENOPE) states an empowered activated patient:
- Understands their health condition and its effect on their body.
- Feels able to participate in decision-making with their healthcare professionals
- Feels able to make informed choices about treatment.
- Understands the need to make necessary changes to their lifestyle for managing their condition.
- Is able to challenge and ask questions of the healthcare professionals providing their care.
- Takes responsibility for their health and actively seeks care only when necessary.
- Actively seeks out, evaluates and makes use of information.
Empowered patients will better understand how to navigate between the many players in the healthcare system including family, physicians, health insurers, healthcare regulators, pharmacists. When unsure about where to go or what to do next, the empowered patient will feel confident to ask for the information they need.
Public and patient engagement is not a new phenomena in the UK and Canada. A quick Google search brings up many resources from both countries on the topic. There has also been some work on patient empowerment and engagement in an Australian context, but it is relatively immature here.
The following group of resources is far from exhaustive, but it gives a taste for the wide range of information now available on the subject. The documents range from academic research studies, strategic policy frameworks to detailed implementation strategies and workshop findings.
(Health Services) Consumer and Community Engagement Framework
A (Health) Consumer and Community Engagement Framework was published by Health Consumers Queensland (HCQ) in February 2012.
The Consumer and Community Engagement Framework builds upon HCQ’s Consumer Engagement Framework developed in 2010, and the extensive work of the consumer and community services sector around community engagement. It recognises that there is no ‘one size fits all’ approach to consumer and community engagement.
The Framework provides an overarching approach underpinned by a set of 9 principles that incorporate both consumer and community engagement, and a model to support effective engagement strategies.
The Framework is designed to guide and inform local strategies. The Framework promotes a collaborative, integrated and effective engagement by local leadership groups with consumers and communities within the context of wider engagement with Medicare Locals, community services, health practitioners, private hospitals and local, State and Commonwealth governments.
Guide for Engaging with (Health Services) Consumers and the Community
A Guide for Engaging with (Health) Consumers and the Community was published by SA Health (a department of the South Australian Government) in November 2014.
The guide is a a practical toolkit to assist health care services to implement A Framework for Active Partnership with Consumers and the Community.
The Guide is used by all SA Health staff to strengthen and improve the practice of consumer and community engagement processes across SA Health. The accompanying tools are designed to assist staff who are planning, managing or implementing consumer and community quality improvement projects, programs or activities. The tools are based on best practice consumer participation methodology tool-kits and resource guides.
Effective partnerships with consumers and the community exist when they are treated with dignity and respect, as equal partners. Effective partnerships rely on shared information and when the consumers and communities are supported throughout the engagement and collaboration process. Delivering care that is based on partnerships provides many benefits for the health consumer, provider, organisation and system.
Patient and public engagement: a practical guide for health and wellbeing boards
“Patient and public engagement: a practical guide for health and wellbeing boards” was published in November 2012 by the UK Department of Health, UK Local Government Association, the NHS Confederation, and the NHS Institute for Innovation and Improvement.
The guide notes that engaging patients and the public in the commissioning and provision of services is recognised as best practice and is also a statutory requirement under the Health and Social Care Act (2012).
This guide is designed to help health and well-being board members think through, plan and deliver their responsibilities in relation to patient and public engagement. It provides practical learning on ‘how’ and ‘when’ to engage.
Strengthening Public and Patient Engagement in Health Technology Assessment in Ontario
In May 2014, the McMaster Health Forum, a group operating out of McMaster University University in Ontario, Canada released the findings from a health technology engagement research project, “Strengthening Public and Patient Engagement in Health Technology Assessment in Ontario“.
The reports notes that in recent years, public and patient engagement has emerged as an imperative for more informed, transparent, accountable, and legitimate decisions about health technologies, but health technology assessment agencies have grappled with the most meaningful ways to achieve such engagement.
To promote discussion about the pros and cons of potentially viable solutions, the authors have selected three elements (among many) of a potentially comprehensive approach for strengthening public and patient engagement in health technology assessment in Ontario.
- Create a comprehensive and flexible framework to engage the public and patients in the HTA process.
- Build capacity within HTA organizations to engage the public and patients
- Build capacity among the public and patients to engage in the HTA process
Transforming Participation in Health and Care
“Transforming Participation in Health and Care“, published in September 2013, is England’s National Health Service blueprint document for encouraging public and patient engagement in health.
This guide is designed to help clinical commissioning groups and other commissioners of health care services to involve:
1) Patients and carers in decisions relating to care and treatment.
2) The public in commissioning processes and decisions.
As a cornerstone policy document, the guide is provides a strategic “promise” and “vision” for UK health services as well as more detailed requirements for local implementation agencies:
The NHS is a cherished national institution. Its founding principle is to provide healthcare which is free at the point of delivery, to anyone who needs it, regardless of their circumstances. The NHS must be more responsive to the needs and wishes of the public, all of whom will use its services at some point in their lives.
NHS England will ensure that public, patient and carer voices are at the centre of our healthcare services, from planning to delivery. Every level of our commissioning system will be informed by insightful methods of listening to those who use and care about our services.
Patient and Public Engagement Toolkit for World Class Commissioning
A group of National Health Service regions in the UK have banded together to release “Patient and Public Engagement Toolkit for World Class Commissioning“.
This toolkit is primarily intended to support commissioners based in Primary Care Trusts, but provides managers from all parts of the health service and their front-line staff with a guide as they work to engage people.
To meet the competencies identified in World Class Commissioning, the authors argue that all of those involved will need to transform the way we work, embedding continuous and meaningful engagement with patients, the public, clinicians and community partners.
Integrated Primary and Community Care Patient and Public Engagement Framework
The Integrated Primary and Community Care Patient and Public Engagement Framework was published by the Government of British Columbia in April 2011.
The authors state that “in health care, the focus for engagement is on both patients and their families and on the broader public.”
The practice of patient and public engagement occurs in three domains:
1) Individual care
The patient is activated, involved in their won health through self-management and an engaged role in health care decision-making. The health care system is patient-centred – responsive, respectful, collaborative.
2) Program and service design
Patients, families, community organisations, strategic partners are engaged in design, delivery and evaulation of health care programs and services.
3) System and community
Patients, families, communities, and strategic partners are engaged in policy development or strategic planning. There may be representation from patient, families, communities, and strategic partners in governance.
Sustainability and Patient Centred Care: How do we achieve both?
Vancouver Coastal Health (VCH) holds semi-regular staff and stakeholder gatherings to discuss important issues in health care. “Sustainability and Patient Centred Care: How do we achieve both?” published in September 2014, is an outcomes report from one such gathering.
Patient centeredness is not only a central theme to patient and public engagement, but a concept that is rapidly gaining momentum provincially, nationally and internationally. When the Community Engagement team brought this as a potential forum theme to senior leadership, they grounded the idea with the additional challenge of sustainability.
The question: “Can we prioritize patient centeredness, and also keep our system sustainable?”
The Community Engagement Team set about building the agenda for the day bringing in senior leadership and other relevant VCH staff to provide background information and context. The morning was focused on laying the groundwork for the dialogue via presentations with question and answer sessions between VCH staff and CEAN. In the afternoon two idea lab workshops explored the overlap between patient centered care and sustainability related to: 1) the My Health My Community survey and 2) Measuring Patient Centered Care.
What does patient empowerment mean to you?
“What does patient empowerment mean to you?” is another in the series of workshop reports by Vancouver Coastal Health, also published in September 2014.
Each year the Community Engagement Department at VCH provides opportunities for VCH staff and leadership to meet with members of the Community Engagement Advisory Network to discuss health service issues that are of interest to both VCH and the public. This year, the topic of Choosing Wisely was selected for discussion. Participants discussed questions about Choosing Wisely in an idea lab session at the forum. The Choosing Wisely initative launched in Canada on April 2nd, 2014.
Patient and Public Engagement Strategy 2014-2017
Finally, Health Education North West London (HENWL) published its Patient and Public Engagement Strategy for 2014-2017 in March 2014.
The authors argue “that the public voice can make an important contribution to NHS service improvement through the commissioning of education and training in North West London.”
The document sets out HENWL’s patient and public engagement strategy which was developed through the Public Engagement Committee. It outlines the rationale and methodology used to formulate the strategy and shows a clear focus for using public and patient engagement to meet HENWL’s strategic priorities.
Following an extensive review of existing channels for, and insights from, patient and public engagement in the NWL NHS, four themes have been identified as central for HENWL’s public & patient engagement strategy: communication, safety, dignity and co-ordinate my care.
The strategy also outlines how public and patient engagement will be incorporated into NWL’s service transformation programme and other core business activities.
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