Involving service users in the co-production of Pharmacy & Medicines programmes in the Northern Ireland Health and Social Care system

This topical case study from the Pharmacy & Medicines Management Team (PMMT), in Northern Ireland provides thought-provoking insights into how the organisation can improve its approach to public involvement. In particular, it explores the obstacles which such approaches typically come up against and shows how one innovative and determined organisation has been able to tackle these obstacles. While the case study highlights that much remains to be done, it celebrates the improvements which have already been achieved by bringing service users (and their carers) into decision-making processes in respect to the service provided by the PMMT across HSC in Northern Ireland. 

Health and Social Care organisations in Northern Ireland have a statutory duty to involve the public and consult them in relation to their health and social care. Personal and Public Involvement (PPI) is the term used to describe the concept of involving ordinary people and local communities in the planning, commissioning, delivery and evaluation of the HSC services they receive. In particular, HSC organisations are required to develop individual consultation schemes, setting out how they would involve and consult with the Patient Client Council (PCC), service users and carers on:

• the planning of how services are delivered

• the development and proposals for change in the way care is provided

• decisions affecting the provision of care

However, historically there has been an inconsistent and informal approach to PPI across the Pharmacy and Medicines Management Team (PMMT). In the past several attempts have been made to embed PPI into project workplans and resource development, but unfortunately these efforts lacked sustainability, had no dedicated resources and therefore failed to bring about meaningful change. 

The PMMT, which is part of the HSC Strategic Planning and Performance Group (SPPG), is responsible for working with over 500 community pharmacies across Northern Ireland. Pharmacies offer a wide range of services, including dispensing and supply of medicines, vaccinations and offering advice and treatment on everyday health conditions and lifestyle risk factors that contribute to ill health.

Recently, with the increasing emphasis on placing service users and carers at the centre of healthcare decision-making, it was recognised that a significant change in approach and culture was needed across the PMMT. A proposal on the need and benefits of a pharmacy advisory group was developed, and approved by the Pharmacy Team Leads (PTL). As a result of acceptance by PTL that PPI was becoming an intrinsic requirement of service development in an ever-changing health care environment, a dedicated resource was identified to develop, implement and manage a pharmacy PPI group. This dedicated resource consisted of pharmacy co-ordinators, pharmacy advisors, project managers and administrative staff who were committed to implementing the true ethos of PPI.

The Pharmacy Personal & Public Advisory Group (PPPAG) was therefore established with the aim of helping with the planning and design of any pharmacy related programmes and to provide advice and guidance as necessary. It was hoped that the group would:

• Create a space for meaningful involvement and help ensure service user/carer voices were heard

• Improve the experience for people who use pharmacy services and ensure the safe use of medicines; and 

• Help the pharmacy team understand how to provide better pharmaceutical services and safer use of medicines.

A recruitment exercise for the PPPAG was carried out in Spring 2024. An information pack, draft terms of reference, application form and equal opportunities monitoring form were developed and uploaded to an online website ‘Citizenspace’ to be completed electronically or alternatively, the documents could be downloaded in paper version and sent in. An advert containing background information and a link to the recruitment was shared on SPPGs social media accounts and the PCC advertised the recruitment opportunity twice in their weekly newsletter.  In addition, the advert was shared with several community and voluntary groups to share with their members. 

By the end of the recruitment drive we had received eight successful applications.  An introductory call was arranged with each service user/carer and the first introductory online meeting was organised. Although the service users were very knowledgeable in the area of PPI we were aware that they were all new to the field of pharmacy & medicines management. In order to try and mitigate the feeling of being overwhelmed each service user/carer was assigned a named contact from the PMMT to answer any queries, support involvement and knowledge development.

The members who make up the PPPAG come from a range of different backgrounds, socio-economic groups, locations, health and level of previous experiences. The group currently contains five service users and two carers. SPPG input into the group includes a pharmacy co-ordinator, two pharmacy advisors, one information pharmacist, two project managers and one project support officer. The SPPG PPI Lead supported the group as and when required.

From the beginning we acknowledged that, because we could not offer any monetary payment to members of the PPPAG, we had to identify other  incentives to keep the service users engaged and motivated. We offered members training opportunities e.g. one member attended a masterclass on Outcomes Based Commissioning offered by Governance International and will attend future masterclasses. In fact, this service user is due to give a presentation at a future masterclass. Our service user found this very beneficial and was able to put what she had learnt to practice in her everyday job. 

Since its first meeting in June 2024, the PPPAG has made great progress in a short period of time. However, there were several key obstacles to be resolved if we were to successfully implement the culture of PPI into the PMMT.

Obstacle 1 – changing the culture and selling the idea to the PMMT.

Result – As has been mentioned there had been several previous attempts to embed PPI into the ethos of the PMMT with little success.  This time though we were determined it would be different. 

Over several months members of the team attended internal team meetings where it was explained what the PPI group was trying to achieve, the benefits it would bring to our pharmacy services but importantly the benefits it would bring to service users across the HSC system. Over time attitudes which had previously existed, of its quicker and easier to do it yourself, began to fade. 

Obstacle 2 - Absence of a standardised, structured approach to recruiting service users and carers.

Result – A major obstacle was how we would recruit service users and carers.  A recruitment strategy was developed to identify and engage with service users and carers. An information pack was developed to ensure clarity around roles, expectations, and the purpose of the group. We advertised for expressions of interest via social media, PCC and various community and voluntary organisations. Every effort was made to recruit a diverse range of service users and carers that would represent all sections across Section 75 of the Northern Ireland Act 1998 which requires public authorities to promote equality of opportunity and good relations across various categories including religious belief, political opinion, gender, race, age and disability. 

Once we had sufficient members, we decided to hold an online meeting as this allowed us to include people from diverse locations across Northern Ireland, as people would not have to travel to attend meetings.

Obstacle 3 - Absence of a governance structure 

Result – in order to ensure the group was compliant with all necessary governance and operational structures a full suite of documents was developed which would outline the remit, decision make process, reporting structure and operational structure of the group. 

In addition, we co-produced a communication plan, terms of reference and job descriptions for the chair and co-chair. 

Service users/carers were asked to identify priority areas to formulate a joint workplan for the next 2 years. It was recognised that this work plan must include areas of concern and interest to meet both internal SPPG objectives but at the same time include topics of interest to the service users. 

Furthermore, collectively we agreed the name of the group – the Pharmacy Personal & Public Advisory Group (PPPAG) - and appointed a service user as joint co-chair alongside a member from the PMMT.

Obstacle 4 - Managing the expectations of the service users

Result – the service users who became part of the PPI group were all very experienced and expected to see huge change happen. Unfortunately, however, a lot of what they were asking was outside our control and something over which we had no influence, e.g. policy/legislative change. After a lot of explaining and reassurance, eventually we were able to show what we could achieve would have major benefits across the HSC structure – for example, reviewing wording in a patient information leaflet (PIL) from a health literacy viewpoint would ensure that the resources we distributed into the HSC system would be in a format and language that everyday service users could easily understand and act upon. 

Obstacle 5 – lack of internal PMMT knowledge on PPI processes

Result – Although members across PMMT were very committed to the ethos and benefits a PPI group would bring, it was evident that there were varying levels of experience and exposure to PPI practices and we would require guidance in setting up the group.

Thankfully, the PPI Lead in SPPG was very supportive and provided guidance in the early days of developing the group. 

Additionally, our service users have been an excellent source for individual learning across PMMT. They are a very dedicated and experienced group of individuals who managed to guide us and expose us to new situations during the early developmental stages of the group.

We all acknowledge this is a journey and there is still a lot for us all to learn but it is a journey we have started together and will continue to learn from each other.

Obstacle 6 – Service users had little knowledge or experience of pharmacy or medicines management and were unfamiliar with the issues faced across the PMMT.

Result - We developed a mentorship approach. A named contact from within the PMMT was provided to each service user. This provided a dedicated point of contact to support engagement and answer any queries. This also helped to build up relationships across the group based on respect, trust and friendship.

A key success for the group has been its influence on shaping training for community pharmacists to better support carers. Service users in the PPPAG identified carers as a priority area, and during a recent meeting, it was recognised that community pharmacists are in a unique position to offer support and appropriate signposting to carers. Members highlighted the value of dedicated training to help pharmacists fulfil this role effectively.  As a result, a meeting was held with the Northern Ireland Centre for Pharmacy Learning and Development (NICPLD), where the proposal was well received. NICPLD has since confirmed its capacity to deliver this training during September–December 2025 and will collaborate with service users and carers from the PPI group to incorporate lived experiences and real-life perspectives into the programme. One service user is going to record a video about her experience of caring for a family member and a second member will join the webinar for a Q&A at the end. 

The PPPAG also contributed to the development of the Northern Ireland (NI) adaptation of the World Health Organization’s 5 Moments for Medication Safety patient engagement tool. The group took part in a focus group session where they reviewed the questions associated with each of the five moments and provided feedback on both content and language. Based on this input, a prototype was created, and the group offered additional feedback, which was incorporated into the final version. This version is scheduled for launch across NI in autumn 2025. 

In addition to the above achievements the group has also made invaluable contributions to the development and design of resources and patient information leaflets for use across the HSC sector. These include 

• A shingles poster for the Pharmacy First service in community pharmacies.

• A patient information leaflet on the prescribing of Mounjaro® (Tirzepatide) for managing weight loss/obesity in Northern Ireland.

• Posters on the greener disposal of inhaler waste. The posters were intended for display in GP practices and community pharmacies. Drafts were shared with PPPAG members and the feedback was really beneficial. Coming from a healthcare background the team hadn’t considered some of the points that were raised and this resulted in amendments to the poster content to make them more patient-focused. The feedback included suggestions to incorporate simple visual aids, which were well received. The graphic designer noted this idea had not been previously considered and found it to be an excellent and intuitive addition.

Management of diabetes - one of our service users has a special interest in this and was asked for input into a patient information leaflet on the use of diabetic medication.

PPPAG involvement has been very well received across the HSC sector.

With regards to the input the group made into the Five Moments of Medication Patient Safety Tool, the Pharmacy Adviser made the following comment: “The input and perspectives shared by the group were instrumental in shaping the final version of the tool. The Transforming Medication Safety NI team sincerely appreciate the group’s engagement and the valuable feedback they provided.”

Cathy Martin, Service User and co-chair of the PPPAG says: "Our regional community pharmacy service user group has been an excellent example of good meaningful practice whereby our voices have been heard, valued and impactful! Seeing tangible actions coming from our lived experience voice for eg feeding back on some PR material on inhalers and diabetes and even more significant seeing community pharmacists getting training into signposting carers! I look forward to seeing what else we can achieve."

A Pharmacy Adviser comments: “I really enjoy being part of this group. Since leaving my previous job (so many years ago!) I have had no real direct contact with patients/members of the public so this is a great opportunity to hear their views and work together to shape pharmacy services. In previous posts, I was aware of people who had a caring role for others.  However, it is only from being part of this group and hearing the lived experience of the service users that I am really beginning to understand all the issues associated with this role. I think we are taking very positive steps to promote awareness of carers and how to support them as a direct outcome of the work of this group”.

Another Pharmacy Adviser comments: “I have found it refreshing working alongside service users; their enthusiasm to make things better for other service users and the loved ones they care for is remarkable. They give up their own time to provide insight to the projects SPPG pharmacy & medicines management team is developing and delivering to patients; they are quietly making a difference to the health & well-being of others in Northern Ireland”.

Danielle from NICPLD says: “Having service users involved in the training adds real-life insight and helps bring the content to life. It gives pharmacists a better understanding of what carer’s experience, making the training more relevant, practical, and meaningful”.

Although no direct monetary cost savings can be attributed directly to the PPPAG group, it has been acknowledged that the experience and advice that has been provided to various elements of the PMMT programme of work has been invaluable, both in terms of lived experience and ensuring resources have been reviewed in terms of health literacy and are easy to understand.

There have been many key learning points but personally I acknowledge that although we have not had the opportunity for full co-design and co-production of services, involving the PPPAG in the co-design and review of resources from a servicer user point of view has been invaluable.

We have been able to co-produce resources which come both from a professional and pharmaceutical point of view and from a lived experience and service user viewpoint.  Jointly the PMMT and the PPPAG group complement each other, with each person bringing their own, different experience, to contribute towards producing better resources for the general public.  It is hoped going forward that all public-facing information will be co-produced jointly between PMMT and the PPPAG.

Co-production and co-design, where service users are involved from the start in the decision making, designing, creating and planning and are an intrinsic part of the process, has not been fully tested yet in the working of the PPPAG but we are determined that this will be the next step in our journey. We already have identified service redesign projects where we are intending to involve service users in the design and decision-making process from the start.

From a personal point of view, as co-chair, I believe a huge learning for me has been the development of my own self-awareness, leadership and emotional intelligence.  Managing and leading such a diverse team with varying levels of experience and personalities has been both challenging and rewarding. Seeing the achievements the PPPAG has made in such a short period of time makes me excited for the possibilities to what we can achieve together as a team in the future.

Further information is available at https://online.hscni.net/our-work/pharmacy-and-medicines-management/