It’s a patient’s right to be involved in decisions about their healthcare – so why aren’t we doing it enough?

We expect to be included in decisions about our care, yet one in three patients report not being included as much as they would like. Health services are working to include patients in decisions through Shared Decision Making (SDM) but lack robust research evidence to support implementation in hospitals.  In today’s analysis Alexandra Waddell (@WADDELLAL) of Monash University (@BehaviourWorksAustralia) shares a summary of her recently-published paper, co-authored with Alyse Lennox (@alyselennox), Gerri Spassova, and Peter Bragge (@BraggePeter). It is the first publication to explore insights into barriers and facilitators to SDM faced by patients and clinicians, specifically in hospital environments. It also goes beyond past research to include other crucial stakeholders such as health service decision-makers and administrators, and government policymakers.

In Australia, it’s a patient’s right to be involved in decisions about their care, but they’re not always included, especially in hospitals.

Shared Decision Making (SDM) is the process by which patients and clinicians come to a decision regarding the next steps in the patient’s care. It involves an active two-way discussion. The clinician brings their knowledge about risks and benefits of different treatment options and their clinical expertise, while the patient is considered an expert in their own life, values, preferences, and goals. Patients included in the decision-making process have better health outcomes and show increased quality of life.

From a policy perspective, there are levers at the National and State level that tell health services to include patients in decision making. Yet over a third of patients tell us they are not included in decisions about their care as much as they would like.

How does policy encourage SDM?

SDM is promoted by policies at both the National and State level. The National Safety and Quality Health Service (NSQHS) Standards were updated in 2019 and explicitly mention SDM. Health services are required to show evidence of SDM implementation to receive accreditation.

In Victoria, Safer Care Victoria’s Partnering in Healthcare Framework requires health services to implement one or two domains each year, of which SDM is one. This means that health services across Victoria will have the opportunity to work on SDM implementation at some point over five years (from the Framework’s inception in 2019).

Even with a push from policymakers, SDM will take time to implement. It is asking a lot of those within the system to speed up the move from a paternalistic model of care to one where the patient has power.

Why don’t patients get enough say?

We conducted a systematic review to investigate what gets in the way of SDM in hospital settings. So far, research has focused on primary and secondary care. SDM implementation in hospitals appears to be a relatively young field with little analysis. This makes it difficult for hospitals to use evidence to implement the process.

Our review also included additional stakeholder insights beyond the usual patient-clinician relationship, including hospital leaders, hospital administrators, and government policymakers, making this the first review to examine other stakeholders.

Five ways policymakers can help hospitals involve patients in SDM

1.     Include stakeholders in research, in addition to clinicians and patients

Shared decisions happen between patients and clinicians but are influenced by the systems in which they occur. Patients and clinicians may not have insight into all the factors influencing their decision-making, such as hospital policies and strategic planning, government policy and strategic planning, and funding allocation.

We need to include hospital leaders and administrators, and government policymakers to understand these factors and address them.

2.     Continue to encourage SDM research

Although health services are being asked to change, without a solid evidence base to guide them, hospitals are left to create implementation strategies based on SDM research from primary and secondary care contexts. There is also a dearth of implementation research regarding SDM. Policymakers can promote SDM by funding ongoing research to assess what does and doesn’t work to increase SDM in hospitals.

3.     Promote SDM through guidelines and policies

Many clinicians believe they must provide one option or “sell” a particular option. Health policymakers in government and health services must ensure clinicians feel supported to engage patients in SDM. This can be done through guidelines and policy development to support the use of SDM.

4.     Ensure everyone knows what SDM is and have the skills to practise it

To fulfil patients' rights to be involved in decisions about their care, we must ensure every staff member working in health services understands what SDM is and why it’s essential.

Clinicians also need practice communicating risks and benefits. Educators, governing bodies, government agencies, and health services should ensure their staff are given practical training in how to have SDM conversations.

5.     Promote SDM through physical space – make sure there are private, quiet spaces, and enough time

Clinicians tell us it’s challenging to have SDM conversations in noisy and busy ward environments and when they’re pressed for time. Health services should ensure there’s adequate space and privacy in which to conduct SDM conversations.

Context is everything when making healthcare decisions

Changing practice to include patients in decisions about their care can seem like a daunting task. It’s not as simple as telling clinicians they need to change their practice, giving clinicians training, or giving patients an informational pamphlet.

Policymakers have a crucial role in advancing SDM in health services. True change involves all levels of the healthcare system, and there’s no one-size-fits-all approach. The factors affecting decisions in maternity care will differ from those in an emergency, and what works in one health service may not work in another. Policymakers can help health services implement SDM through funding for research, changes to guidelines and procedures, and resource allocation.

A behavioural approach can be helpful, as it allows health services to deep-dive into what helps and what gets in the way from multiple perspectives. Then, using theory-informed behaviour change to address the specific factors discovered while considering what is and isn’t feasible for the decision context and the service.

Understanding what helps and hinders SDM from multiple stakeholder perspectives while considering contextual factors is key to upholding a patient’s right to be included in decisions about their care.

Moderator: Lisa J. Wheildon (@wheeliebinit)