As we approach World Mental Health Day and reflect on the importance of quality mental health access for all, attention must be paid to the importance of patient engagement.

GAMIAN-Europe is actively involved in empowerment advocacy. In fact, GAMIAN-Europe produced a Call to Action on patient empowerment that was endorsed by 53 patient organisations and 31 MEPs.

Why is patient engagement important?

Patients are increasingly demanding more flexible and receptive healthcare systems that take into account their personal needs and priorities [1]

Patient engagement is critical to providing good quality health services to all. It is known to increase the cost-effectiveness of health systems. It can also lead to improved quality of life of patients and better accountability of health services [2].

When patients are better engaged in their healthcare system, they tend to be more trustworthy of healthcare providers. This can be very useful for maintaining a positive patient-clinician relationship [3].

Patient engagement, pertaining to mental health specifically, is crucial. Mental health needs vary a lot among patients and treatments need to be tailored to the individual. People living with serious mental ill-health are also more likely to stop taking their treatment so making sure they trust their healthcare system is crucial.

What forms does patient engagement take?

The most common form of patient engagement occurs at the level of care decision making, where patients are directly integrated into the decisions made about their treatment.

Patient engagement in healthcare can also take the form of collecting information on their experience of care through interviews, focus groups or surveys.

Patients are increasingly involved in policy development, helping with the dissemination of tools and educational material. They also advise on research projects, for which they provide their input in the objectives and content of the research.

Yet, in order to integrate patient views in the full decision-making process, they must be integrated at all levels of health service delivery [4].

Specifically, having patients engaged in the design and delivery of the healthcare system is crucial to making sure the system is representative of their needs. This is often done through advisory committees, through which patients provide their input on how healthcare should be delivered.

What are the optimal strategies for engaging patients in health service design and delivery?

If you are engaged as a patient in a healthcare advisory committee, or as a service provider in a patient engagement process, the following strategies might help you make sure the procedure runs at its best.

Clarifying roles and objectives

An important, but often overlooked strategy for optimal patient involvement is clarifying patient objectives and roles. Patients often do not know what their exact role should be in the patient engagement process.

Studies show that giving service users specific roles when engaging them, is critical to effective engagement. This can also take the form of providing patients with precise questions they are asked to comment on.

This can make patients feel more comfortable voicing their opinions. Examples of such techniques include engaging patients in a formal structure such as a steering committee where they are given a title specifying their duties[5].

Training

Training sessions can also help clarify the roles of patients and make sure the engagement process runs smoothly. Training should aim to provide greater clarity on the patient role in the engagement process. Such training can also help create meaningful relationships between service users and facilitators[6]. This is important because service providers tend to be initially reluctant to giving more decision-making power to patients[7].

Flexible discussions

In order to make sure that all of the patients’ views are correctly captured along the engagement process, flexibility should be introduced into the discussions.

Effective techniques identified by studies include:

• peer reporter interviews (in which 2 patients interview each other, for instance)
• headline generation (where phrases are created to capture important issues)
• group discussions (using a ‘who, why, when, what, how’ structure, for example)
• a written exercise (in which participants are asked to brainstorm ideas) [8].

These strategies give participants more freedom when thinking of ways to improve the healthcare system, which is key to bringing out their best ideas.

Making sure everyone has an equal say

To guarantee optimal patient engagement, the means through which participants voice their opinions should be welcoming of everyone’s view. The discussions must be laid out in such a way that they involve deliberation and democratic dialogue. Examples of ways to do this include values and beliefs exercises, where patients and service-providers clarify their general values and then use it as a way to find common ground for more specific questions.

Making sure everyone is represented

Making sure all patients are equally represented is also important. Patients’ engagement needs to be representative of the wider patient group.

Attention must be paid to having sufficient diversity in terms of ethnic background, gender, sexual orientation and age [9]. Patients should be recruited in a variety of ways such as through healthcare providers, and using patients’ wider networks [10] .

Location may also be a barrier to the participation of some patients. Mental health conditions may mean patients find it difficult to leave their house. Participants may also have other obligations such as taking care of their children. Engaging with patients in their homes may therefore be needed. Meetings may also need to be conducted in hospitals when engaging with inpatients.

In sum, a wide range of techniques can make the patient engagement process run in a smoother, more effective way. And many of these techniques are easy to implement and cost-effective!

Author: Daphne Lamirel (GAMIAN-Europe)

[1] WHO, 2016

[2] Domecq et al., 2014; Clancy et al., 2011; Huan Xu et al., 2019

[3] WHO, 2016

[4] Bombard et al., 2018

[5] Bombard et al., 2018

[6] Lofters et al., 2015

[7] Frazier et al., 2007

[8] Bombard et al., 2018

[9] Macdonnel et al., 2013

[10] Bombard et al., 2018