The authors of this paper have developed a definition, including both a short-form and a long-form definition. Here is the short-form and the long-form can be found in the full paper:

Patient and family* engagement in the ICU is an active partnership between health professionals and patients and families working at every level of the healthcare system to improve health and the quality, safety, and delivery of healthcare. Arenas for such engagement include but are not limited to participation in direct care, communication of patient values and goals, and transformation of care processes to promote and protect individual respect and dignity. PFE comprises five core concepts: Collaboration, Respect and Dignity, Activation and Participation, Information Sharing, and Decision Making. Brief summaries of the core concepts are presented in Table 1 and depicted visually in Figure 1.

*Family is broadly defined to include all the individuals whom the patient wants involved in his/her care, regardless of whether they are related biologically, legally, or otherwise; if the patient is noncommunicative, health professionals will make their best effort to identify and include the individuals whom the patient would want involved in his/her care.

- 21 tools (3-5 pages each) that address improving:

• spoken communication.
• written communication.
• self-management and empowerment.
• supportive systems.

- Appendices (over 25 resources such as sample forms, PowerPoint presentations, and worksheets).

- Quick start guide.

• recipes for engagement
• how to write an engagement plan
• engagement legislation briefing.

The following indicators have been identified to help you improve in the following areas: 

• leadership
• organisational culture
• collecting feedback — capacity and capability to effectively collect feedback
• analysis and triangulation — the use of quality intelligence systems to make sense of feedback and to triangulate it with other quality measures 
• reporting — to use patient feedback effectively by learning from it to drive quality improvement.

• Though PPI is increasingly common in healthcare research, there is limited agreement about how, when, and why it should best be done.
• Patients and the public get involved in research for a variety of reasons but often because they want to help others and contribute to a better healthcare system.
• To enable involvement, PPI needs to be funded adequately, opportunities need to be clearly communicated, and support needs to be available for researchers and PPI contributors.
• More PPI on its own doesn’t necessarily mean better research, and doing PPI just for the sake of it can discourage researchers and disenfranchise people who get involved. PPI should be relevant and meaningful for the research and the people involved.
• PPI has the potential to improve research and empower contributors, but evidence about how that actually happens, to what extent, and to what effect, is limited.
• To monitor and evaluate PPI, researchers will need to agree on what study designs are appropriate, be clear about what PPI activities are meant to achieve, and focus evaluations on the process of PPI and/or its contributions to research.

Part of this paper considered three examples of notable practice in involving patients in the development of their general practice services. These were not selected because they were ‘typical’ but because they demonstrated, in some depth, a variety of approaches to patient involvement.

• The first example looked at two health centres with patient forums. One forum was more formal, with designated officers and control of the agendas and conduct of meetings. The other opted for a looser, less formal approach, as a ‘friend’ of the centre. 
• The second example looked at a practice-based commissioning structure that was strongly guided by the Primary Care Trust and was trying to unite existing and new practice representatives into a new and dynamic network.
• The final example looked at a different kind of consortium, driven more by the practices themselves, in which patient representatives were integral and essential to the decision-making process. It was also looking to broaden its constituency with an area-wide health forum.

While most studies examined involvement in standing committees or projects, patient input and influence on decisions were minimal. Lack of skill and negative beliefs among providers were patient engagement barriers.

Patient engagement facilitators included:

• careful selection and joint training of patients and providers
• formalising patient roles
• informal interaction to build trust
• involving patients early in projects
• small team size
• frequent meetings
• active solicitation of patient input in meetings
• debriefing after meetings.

Asking patients to provide insight into problems rather than solutions and deploying provider champions may enhance patient influence on hospital services.

Conclusions 

Given the important role of patient engagement in improving hospital services, future research should develop and evaluate behavioural interventions for patient engagement directed at patients and providers informed by the barriers and facilitators identified here. Future studies should also assess the impact on various individual and organisational outcomes.

Further research is needed to:

• elaborate on patient engagement activities suitable for consultation, involvement and partnership
• test behavioural interventions for patient engagement directed at patients and providers informed by the barriers and facilitators identified
• demonstrate the impact of patient engagement.

This would identify types of patient engagement activities and supportive conditions that should be prioritised by hospitals.

Participants’ perceptions regarding their engagement as a patient safety strategy were expressed through three overarching themes:

• the word 'patient' obscures the message
• safety is a shared responsibility 
• involvement in safety is a right.

Themes were further defined by eight subthemes.

Conclusions

Using direct messaging, such as 'your safety' as opposed to 'patient safety' and teaching patients specific behaviours to maintain their safety appeared to facilitate patient engagement and increase awareness of safety issues. Patients may be willing to accept some responsibility for ensuring their safety by engaging in behaviours that are intuitive or that they are clearly instructed to do. However, they described their involvement in their safety as a right, not an obligation.

Interpretation

Clear, inviting communication appears to have the greatest potential to enhance patients’ engagement in their safety. Nurses’ ongoing assessment of patients’ ability to engage is critical insofar as it provides the opportunity to encourage engagement without placing undue burden on them. By employing communication techniques that consider patients’ perspectives, nurses can support patient engagement.

It highlights that, as patients come to be seen and treated as partners in their care, there is significant potential to make real gains in patient safety.

Main approaches identified to involving patients in safety improvement 

• Collecting feedback retrospectively.
• Asking patients to help plan broad service change.
• Encouraging patients to help identify risks when they are receiving care.

It looks at engaging across the system as well as with specific groups:

• Staff
• Patients
• Doctors
• Nurses and allied health professionals
• Boards

• How to select, implement and evaluate the guide’s strategies.
• How patient and family engagement can benefit your hospital.
• How senior hospital leadership can promote patient and family engagement.
• Strategy 1: Working with patients and families as advisors shows how hospitals can work with patients and family members as advisors at the organisational level.
• Strategy 2: Communicating to improve quality helps improve communication among patients, family members, clinicians and hospital staff from the point of admission.
• Strategy 3: Nurse bedside shift report supports the safe handoff of care between nurses by involving the patient and family in the change of shift report for nurses.
• Strategy 4: IDEAL discharge planning helps reduce preventable readmissions by engaging patients and family members in the transition from hospital to home.

It includes recommended actions for:

• leaders of healthcare systems
• healthcare clinicians and staff
• healthcare policy makers
• patients, families and the public.

• Strong, committed senior leadership
• Active engagement of patients and families 
• Clarity of goals
• Focus on the workforce 
• Building staff capacity 
• Adequate resourcing of care delivery redesign 
• Performance measurement and feedback 

The framework describes three levels of patient engagement in patient safety across three levels of the NHS healthcare system. It also presents real-world examples of patient engagement in patient safety and applies these to the framework.

For the purposes of the framework:

• Patient safety is defined as freedom from healthcare associated preventable harm.
• Patient engagement is the encouragement of patients, carers and families to work with healthcare professionals, healthcare service providers, commissioners and policy makers to improve health and healthcare. Descriptors of three levels of patient engagement are presented in the framework.
• Patients may be someone receiving care and giving ‘real-time’ feedback, patients who have previously received care or treatment, patients who have experienced harm, or members of the public.