These days, many patients actively participate in their own healthcare. This includes understanding their health risks, working with their physicians and making shared decisions regarding their treatment.
This type of approach can lead to better outcomes, and result in patients taking more responsibility and ownership of their care.
Some studies show that a patient-shared decision-making approach can also improve trust in practitioners and have a positive effect on healthcare satisfaction and quality of life. In some cases, it can even reduce costs.
Feedback from patients through surveys is being increasingly utilised to make future improvements in healthcare services.
Patients as healthcare leaders?
This patient-centred approach can be taken a step further – where patients are viewed as having expertise and are given leadership roles in healthcare.
For example, cancer patients who have unique insights from their real-life experience can be involved in designing services based on their perspectives.
A study commissioned by the UK NHS and published in the Patient Experience Journal looked into health organisations that utilise patients in healthcare leadership.
While it found no single right approach to building impactful patient leadership, it did discover three key messages for creating the conditions for success.
Evidence-based keys for equipping patients as leaders
- Invest in patient leaders
This involves making patient leaders an integral part of decision-making, both at formal and informal levels. This could include:
- Involving patients in designing services – for example, the study cited survey feedback from a teenager who regularly attends hospital. This teen found the hospital was “not a good space for teenagers” and was involved in designing a comfortable and personalised room for teenaged patients to hang out in.
- Training and development for patient leaders – possibly even a training certificate to equip patients for specific activities.
- Providing leaders with access to patient feedback data – this is because patient leaders that brought in evidence-based data found their input into conversations about improving patient care was taken more seriously.
- Engaging with patients from all sections of the community – the study found that patient leaders often came from a narrow social group and that it was important to engage with diverse groups to get a range of perspectives.
- Put robust feedback mechanisms in place
This second key ingredient is based on the expectation that organisations are more inclined to listen when rigorous evidence is supplied.
This includes the following:
- Putting equal emphasis on both qualitative and quantitative feedback data – and creating systems to bring both types of data into the picture.
- Reporting back on what’s changed – refers to where organisations record what changes they made as a result of patient feedback received. This also led to patient leaders feeling more valued and trusted.
- Develop a culture and system that acts on feedback
Gathering feedback data is only one step. It’s also important that organisations are able to act on the information received. This includes fostering an improvement and continuous learning mindset and developing policies and systems that bring all the findings together.
How could cancer patient leadership happen in Australia?
Patients in Australia have valuable knowledge when it comes to navigating the health system, which could be used to improve service design and delivery.
This needs to start with putting more emphasis on a patient-centred approach to healthcare. However, health organisations are sometimes reluctant to employ a strongly patient-centred approach, for various reasons.
According to some sources, barriers to patient-shared decision-making include time constraints, lack of provider training, concerns about liability and the belief that patients may not have sufficient understanding or knowledge.
Another barrier could be the strong emphasis that is often placed on clinical treatments and expertise. For example, cancer patients in Australia have sometimes reported that while they were given excellent medical care, they often felt referred to in terms of their illness rather than as a person.
Making advancements in patient-centred healthcare could certainly go a long way towards improving healthcare services for people living with cancer. It could also provide a stepping-stone towards greater involvement of experienced patients in healthcare leadership.
By Christine Cockburn