The ALPACA study: Developing and evaluating a decision support intervention to improve surgical shared-decision making

Background
When patients and healthcare professionals work together to agree on treatment this is called shared decision making (SDM). Good SDM is very important when making decisions about surgery, because operations can be lifechanging.
But for some patients, the experience of SDM is not good. Better SDM for surgery can help patients make better choices and save the NHS money.
Aim
We have developed a new online survey for patients to share their experience of SDM before surgery. This will tell us when patients have not had a good SDM experience. This project will develop and test an intervention (a new package of activities) to improve SDM for these patients. The intervention will likely include immediately sharing any problems with surgical care teams so they can speak with patient again about their treatment.
Methods:
The research will involve five projects:
1) Workshops and conversations with patients/public members and professionals from two NHS hospitals to design
the intervention.
2) Introducing the intervention into two hospitals and working with staff and patients to make sure it works well in a wide range of surgery departments.
3) Workshops with national stakeholders (including patients, surgeons, NHS, National Institute for Health and Care Excellence) to decide how to best roll out the intervention to all NHS hospitals that offer surgery.
4) Studying scientific literature and reviewing data collected in projects 1-2 to find out how improved SDM experiences can help the NHS use its resources better and make patients happier with their care. We will also conduct a nationwide survey to understand how much people value improved SDM.
5) A large study to test the intervention in 20 NHS hospitals. We will recruit 1126 patients, with half receiving the intervention and half receiving normal care (no intervention). This will test if patients receiving the intervention have better SDM than patients who do not, and if the intervention is good value for money. This will help decide if it should be used in the NHS.
Public involvement:
We have worked with patients and the public to develop this project. A patient/public contributor is an equal team member and co-applicant. Going forward, we will regularly meet our Patient/Public Advisory Group and include
patients on our oversight committees. The intervention will be co-developed in partnership with patient/public groups from diverse backgrounds. They will also help write the materials to recruit patients to the study and help interpret study results.
Sharing project results:
Our website and social media will inform the public about the research. We will attend public events and scientific meetings to present the study to communities. We will publish in scientific journals and work with the NHS, decisionmakers,
patient/public contributors and charities to share our results.