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Safe Use of Medicines research team

Stopping medicines: Re-designing the process using Experience-based Co-design

By Dr Janice Olaniyan, Dr Iuri Marques, Dr Daisy Payne, Mr George Peat

In a previous blog entry, we shared our experience of conducting user (patient and supporting peers, who may support patients’ medicines use) and practitioner interviews, to understand the process of stopping medicines in primary care. After these interviews, we used Experience-based Co-design to determine how we can improve this service.

What is Experience-based Co-design?

Experience-based Co-design(EBCD)1 is a process in which patients and staff come together in different sessions to identify priorities to improve services. It is a unique Quality Improvement (QI) approach, which enables staff, patients and carers (or other service users) to jointly reflect on their experiences of a service and work together to identify and implement priorities for improvement.2 Before we began organising our EBCD sessions, we conducted qualitative interviews with patients, supporting peers and healthcare professionals to understand their views and experiences of having medicines stopped (for more information about this part of our research, please see our previous blog here).

Why did we use Experience-base Co-design?

We feel that involving those who have experienced stopping medicines that may no longer be appropriate for them is the best way to ensure we succeed in improving the process of stopping medicines. We can only fully understand and redesign services through real-life experiences of what works and what doesn’t work, and only service users and service providers can provide this insight. The EBCD approach differs from other service improvement techniques in that it is a partnership, with shared leadership between patients and professionals1, which focuses on patient and staff experiences and emotions through storytelling, to identify key opportunities for improvement.2

What exactly did we do?

Patients and their supporting peers were interviewed about their experiences of reducing or stopping their medicines. These interviews were video recorded, and the footage was captured and edited into a short film that summarised their experiences. We then held a number of workshops, which brought patients, their supporting peers, and clinicians (General Practitioners, Nurses, and Pharmacists) together in a neutral space that allowed for an open discussion about the process of reducing or stopping medicines. The short film, capturing patients’ and supporting peers’ views, was shown to the people that attended the workshops to help generate further discussions about experiences of reducing or stopping medication. After the workshops, an event was held to celebrate the contribution of everyone who was involved in the workshops.

What value did EBCD add to our research?

Conducting our EBCD sessions gave us the opportunity to take patients’, supporting peers’ and clinicians’ views into consideration to develop the ideal consultation process for stopping medicines in primary care. Participants came together to reflect on the real-life stories recorded during interviews, building on these to identify patient-centred priorities for improving the consultation and process of stopping medicines in primary care. Patients, their supporting peers and healthcare professionals told us that they enjoyed taking part and valued the opportunity to take an active role in improving the process of stopping medicines.

Where will we go from here?

We have heard what patients, supporting peers and healthcare professionals had to say and will use the information they gave us to redesign the process of stopping medicines in primary care before testing it.

More information

For more information about EBCD and our top five tips for involving Patients and members of the public in developing these sessions, please have a look at our newsletter article here.



  1. Donetto S, Tsianakas V, Robert G. Using Experience-based Co-design (EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions. London: King’s College; 2014.
  2. The Point of Care Foundation. EBCD: Experience-based co-design toolkit. Accessed from Date accessed 04/02/2020 at 17:00 pm



Stopping medicines: Hearing the voices of those involved

By Dr Iuri Marques and Dr Daisy Payne

In our autumn newsletter ( we discussed our work on improving the management of medicines by optimising the process of stopping problematic medicines in primary care. Here we move our focus to how we are capturing patient views about reducing the number of medicines they take.

As people get older and develop health conditions, many are prescribed long-term medicines. With time, more health conditions may develop, more medicines are prescribed and patients risk experiencing medicines-related problems as well as decreased quality of life or frequent unplanned hospital admissions. Patients may also be treated by multiple healthcare professionals in both primary and secondary care at different times. For example, if a patient is admitted to hospital, a consultant may decide to stop one or more medicines, and when the patient is discharged into primary care, the GP may decide to restart them. Consequently, managing medicines is a complex process, and one that can be quite confusing and upsetting for the patient.

The Safe Use of Medicines theme for the NIHR Yorkshire and Humber PSTRC is investigating how we can improve the process of stopping medicines for patients, ensuring the patient understands the reasons behind any decision being made, and takes an active role in the discussions about their care and medicines. We believe that since the process of stopping medicines is so complex, it is important to hear the voices of everyone involved. The first step we took was to engage with patients and members of the public in the development of our study, to ensure we focused on the important aspects of the process and asked the right questions.  They were instrumental in identifying research priorities and co-designing all participant documents so that they were patient friendly. Now, we are interviewing patients who have recently had a medicine stopped, their supporting peers (i.e. friends or relatives who play an active role in the management of patients’ medicines and conditions) and healthcare professionals, to understand their views and experiences.

The healthcare professionals we have interviewed have given us invaluable insight into the process of reducing medicines, including the purpose, usefulness and clinical justification for stopping a medicine and how they communicate this to their patients. However, whilst they are able to reflect on this process, only the patients themselves can provide insight into what it is like to live with these decisions. It is crucial therefore that we speak to patients, since they can provide insights and relate experiences that healthcare professionals cannot.

As well as talking to patients, we are talking to supporting peers – people who are not part of the formal health and care team yet have some involvement in managing patients’ medicines. Supporting peers add a unique and currently unexplored insight into the experiences of patients when medicines are stopped. Their views about what is best for the patient, and their care priorities may differ from the priorities of the patient themselves.

Stopping medicines is and will continue to be a complex process. The best way to improve it is by including everyone who is directly or even indirectly involved, understand their views and experiences, and ultimately give them a voice in how care is delivered in the future.

This research is funded by the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). The views expressed in this article / presentation are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care