Patient empowerment, co-production and leadership

There are many different frameworks for quality improvement. However, one core principle common to them all is the idea that patients have a significant role to play in shaping and monitoring improvements.

Here we discuss a few of the talks from the International Forum 2019 in Glasgow which gave examples of how patients contribute to improving the services they use.

Bold approaches to patient empowerment

We heard a couple of great examples of how healthcare providers set up services which give power back to patients and carers.

Maria Smitmanis Lyle and Alexander Rozental from the Karolinska Institutet in Sweden shared the results from a radical project in Stockholm, which allows people living with psychosis to sign a contract enabling them to self-admit to hospital – no questions asked. The idea behind this is to increase the patients’ control on the hospitalisation process, as well as encouraging them to seek help early. This experiment was something that had been instigated by people living with psychosis.

The doctors feared that it would lead to increased admissions, but in Stockholm the opposite is true – that it actually results in fewer admissions, and fewer bed days. The results are in line with similar projects in Norway and Denmark. Åsa Steinsaphir, who has experience of psychosis and has been part of this project, says that having more control over the help she receives has enabled her to focus more on managing her own health.

Listen below to Maria, Alexander, and Åsa talk more about the Stockholm project, and how patient pressure made it happen:

Bas de Vries from the University Medical Centre in Utrecht in the Netherlands, with Marieke Könings-Stulp from the city’s Wilhelmina Children’s Hospital, presented their work on what they call the ‘Parental Advisory Project’. Parents of children who are being cared for at the children’s hospital are asked to give direct feedback on video about the care their child has received. This is then compiled and shared with medical staff and students, to encourage doctors and trainees to develop more empathy for their patients on a daily basis.

The use of video was considered the next best thing to a face-to-face conversation and meant that the feedback could be shared more widely. For doctors, it provides an opportunity to receive raw and honest feedback, by asking the difficult questions which they knew wouldn’t get a polite response.

One parent who has taken part in this project is Alex de Groot, whose son was receiving care at Wilhelmina Children’s Hospital. He offered his side of the story during this workshop, saying that he hopes that the feedback from parents like him will ensure better care for other children in the future.

Co-production in action

One way to ensure that patients’ voices are heard when it comes to improving services is by putting them in control of designing these services in partnership with healthcare professionals – a model known as ‘co-production’.

Sara Riggare provided an excellent reminder of why patients should be listened to. She has set to self-tracking her own Parkinson’s disease, to monitor the effectiveness of her treatment to control her symptoms. In her talk, Sara pointed out that she has an hour of neurological healthcare a year, but for the remaining 8,765 hours she cares for herself. The message sent to the audience was that many patients are experts in managing their conditions and that doctors should take the time to learn from them.

Listen more to Sara’s views on her self-tracking below:

Annelene Hoejvang Larsen from the Danish Society for Patient Safety present work from an improvement programme aimed at preventing depression in older people. This project involved a collaboration between volunteers, charities, and community health services, because “there are healthcare issues that cannot be solved by healthcare alone”.

A key component of this programme was co-production with volunteers, and treating them not as ‘guests’, but as equal partners. This led to the creation of shared dining projects, bringing elderly people and volunteers together. Annelene thinks that co-production of this type can only be successful if project leaders are comfortable with letting go of control and being flexible enough to allow things to go in new directions. They need to know when to help and when to step back.

Listen to Annelene talk more about what it really means to hand over control in co-production below:

Andrea Marshall from the Ontario Shores Centre for Mental Health Sciences in Canada shared a co-creation project in a completely different sphere – to produce their annual report. Involving people with lived experience of mental illness to shape what the annual report should cover was a natural extension of their commitment to co-creation across the hospital. They also took the step of remunerating people for their time, using a tool from The Change Foundation to help make decisions.

Patient leadership – opportunities and challenges

A growing number of patients are not only getting involved in shaping health services, but also playing a leading role in them.

Isabel Rodrigo presented her experience of putting patients in charge of assessing patient safety at her hospital in Navarra, Spain. The challenge with this approach, Isabel explained, was that patients find it difficult to assess their own care – to stick their hand up and raise concerns about the doctors who are treating them. Patients need training and support to carry out this role effectively, but they also could benefit from being able to raise concerns anonymously, through an app for example.  

Uriëll Malanda shared his experiences of implementing integrated birthcare in the Netherlands, and some of the challenges forming patient/parent councils. One of barriers was the ‘buy-in’ from other people involved in healthcare, but it was also difficult to find the right people to be a part of these councils. Feedback from the parents and patients was that it was difficult work which needed a significant time commitment.

In a panel discussion we heard from a number of patients who talked about how to best encourage others like them to follow suit – and eventually become leaders.

Vincent Dumez from the Centre for Excellence on Partnership with Patients and the Public (CEPPP) in Canada believes that patient leadership emerges naturally when patients are treated as equals. He thinks that to make this happen, clinicians need to respect patient experience. Remuneration may also be needed to officially recognise the importance of the work that patients do in this setting.

Louise Patmore is the patient leader for the Sustainability and Transformation Partnership in Sussex and East Surrey in southern England. She considers it vital to establish a ‘community of interest’, bringing patients in and making sure that they get to see each other and share their experiences. In this way, her approach to patient leadership is rhizomatic – common roots of experience, but different shoots of activity.

Sandra Dudych is a volunteer patient advisor working with multiple cancer organisations in Canada’s Manitoba province. She says it was her oncologist who first inspired her to become a patient advisor, by inviting her at one of their consultations to ask some questions. This tiny but important gesture gave her the permissions to speak up. Sandra said that at first, she was terrified to challenge healthcare professionals, despite knowing what needed to be changed. She thinks that some sort of mentorship programme, or even formal training, for patient advisors is vital. She also raises the point that there is a bias amongst patient advisors towards being white and affluent – something that needs to change.

Listen to Sandra and Louise talk more about their experiences below:

We also hear from patient advocates Cristin Lind and Emma Carwright talk about their involvement in the International Forum 2019 in Glasgow – bringing patients into conference as well as taking the messages out to the wider world.

It’s a challenge for those who are professionally involved in healthcare to admit that they don’t have all the answers. But only by providing patients and carers with the opportunities to give feedback, design the services they use, and entrusting them with leadership, can we ensure that health services truly have patients at their heart.