Reflections on Experience-Based Co-Design (EBCD) at the HIN

Involvement is at the heart of the HIN’s work, enabling us to innovate and improve through the valuable insights of those with lived experience in health and social care.

Recently, we embraced the Experience-Based Co-Design (EBCD) methodology, developed by the Point of Care Foundation. This approach places co-design at the centre of service development, ensuring all perspectives are included. To date, two EBCD projects have been completed here at the HIN, supported by our Involvement team. Through these projects we have gained a wealth of knowledge and valuable insights, and we are eager to share our reflections to provide guidance and support to others on their own journeys

What is involved?

Experience-based co-design (EBCD) is a multi-step process involving deep engagement with both patients and staff to improve how we provide care. Here’s how it unfolds:

How have we used the EBCD approach?

Our first project was facilitated by the Patient Safety and Experience team aiming to improve the experience of people living with chronic pain by leveraging existing service improvement in south London. This was in response to the nationally commissioned Medicines Safety Improvement Programme (MedSIP), and findings that living with chronic pain can leave people feeling alone, isolated, and not being aware of how to access support that does not come in the form of pain medicines e.g. opioids.

More recently, the HIN Long-Term Conditions team completed an EBCD project commissioned by King’s Health Partners focusing on improving access to mental health and wellbeing support for patients with long-term conditions. This project specifically focused on patients who were eligible to attend pulmonary rehabilitation, which is an exercise and education programme designed for people with lung disease or respiratory conditions, who experience symptoms of breathlessness.

What did we learn from the process?

From our projects, we found that the EBCD methodology can provide rich insights into the experience of patients and staff. Through the in-depth interviews and group discussions, we were able build understanding and mutual respect between participants, gather their honest reflections and emotions, and use this to identify opportunities for improvement.

We found that in both cases, being a participant in itself had significant benefits for patients, as they developed connections with the HIN team and other participants, evoking feelings of belonging to a team and working together to make positive change. Feedback forms were collected after the process to capture these views.

Some of our patients and staff who took part in our project said:

Positive feedback from staff was also collected, which highlighted the value of hearing patient voices, understanding their experiences, and working with them to make something meaningful. Staff also viewed the experience as a growth opportunity, having not experienced EBCD methodology before.

Whilst the Point of Care Foundation recommends a clear structure and timeline, the methodology is adaptable and can be tailored to different situations. Both HIN projects followed a shortened timeline and therefore omitted some elements, and held all events online.

Completing the project entirely online can work very well as we have demonstrated, providing flexibility to participants, and enabling attendance from those who may not be able to travel due to busy schedules, their health condition, or other reasons. However it does require a different approach and it was noted that, if possible, it would have been advantageous to hold certain events in person such as the joint patient and staff feedback event, or the celebration event to close the project to help further build relationships. We also learnt some tips around online facilitation, making sure that each breakout room has a facilitator and using a round-robin technique to offer all participants an equal opportunity to comment. We gathered feedback after each event, allowing us to adapt our approach as we went.

What are some of the challenges of EBCD and how did we address them?

One of the greatest challenges in a smaller timeframe is likely to be recruitment, and ensuring a diverse cohort is assembled. We recommend trying to establish links with clinicians before starting recruitment, as having these existing contacts will help make this stage more efficient. It is also a good idea to give staff and patients flexibility when it comes to scheduling interviews and workshops so they can plan ahead, and always allow alternative methods of feedback if a participant cannot attend an event (i.e. via email or phone call).

An adaptation suggested by the Point of Care Foundation is using a pre-made video instead of developing your own impact film due to the time and resource requirement associated with this part of the process. However, in both projects, we found the video stage to be incredibly valuable in terms of building trust and relationships with patients. Having an in-house communications team who could support the editing and video production also greatly supported this process. We found the end result to be a very powerful resource and we therefore believe the impact film is important to incorporate wherever possible.

Undertaking an EBCD project requires dedicated resources and time to deliver well, and this should not be underestimated when planning a project. There is however no doubt that the end result will be worth it, as these two projects have demonstrated. As we continue to build expertise in this area, we hope EBCD projects become a more significant part of our HIN offer, and that more HIN teams will consider using this worthwhile and rewarding approach to involving people in their improvement projects.