The game changing effects of co-production and patient involvement in raising the profile of oral health

Ian Needleman is a Professor of Periodontology (gum health) and Evidence-informed Healthcare at UCL Eastman Dental Institute and Honorary Consultant in Periodontology with UCL Hospitals (UCLH). In this blog he reflects on the benefits to better health and wellbeing from his work in patient involvement and co-production, the lessons he has learnt and their ability to not only better understand patients’ needs but also meet them in ways that wouldn’t otherwise be considered, let alone possible.

Oral health affects people’s lives. The World Health Organisation (WHO) have declared poor oral health to be the biggest global health burden affecting almost half of the world’s population. And yet this is not widely talked about or acted upon. Why not? It’s a complex picture but at the heart of this is the historic separation of oral health and dentistry from the general health agenda. Our research group at the Eastman Dental Institute has a long interest in the broader impacts of oral health on general health, wellbeing and performance. We wanted to understand what’s important to people and how to promote dialogue and innovation outside of our own silo? As such, we embarked on a series of different projects and pieces of work that are outlined below as examples of the impact that working in a co-produced way and involving patients in research can have.

Developing a patient involvement session at a conference

One of our early projects was an invitation to develop a patient involvement session at the three-yearly EuroPerio 8 conference held in London in 2015 attracting around 10,000 delegates. Together with the Media Trust we produced a 10-minute film, The Sound of Periodontitis, the title a challenge to the belief that gum disease is a silent condition. Angela, a retired ward nurse, talks about how gum ill-health led to social exclusion. She says on camera that for her, it was worse than a cancer diagnosis because the perceived shame meant she could not talk about it to others. The film has had a big impact on changing perceptions both widely within and outside oral health and has been translated into seven European languages. It is used widely to support patient groups and in training clinicians. Last year, in a review of the first ten EuroPerio conferences, the film was selected as the clinical highlight of the entire three-day eighth conference.

I learnt two lessons. Firstly, given the opportunity, patients can powerfully change perceptions and understanding of health. Secondly, it is possible to involve patients meaningfully in large international conferences.

Establishing a patient forum

Thinking about strengthening patient and public involvement (PPI) led us to develop a number of initiatives. Firstly, as part of my Presidential year of the British Society of Periodontology and Implant Dentistry (the national charity promoting gum health) in 2017, I established a Patient Forum which now sits on the Society’s board. The Forum quickly established itself as an integral part of the Society, working on many initiatives including national guidelines. There has been huge interest from other Societies internationally about setting up patient groups as they have seen how our Forum contributes to better and more impactful health guidance. Impactful meaning more relevant to the public and on helping to guide national policy including the NHS. It does need patience. Whilst supportive, it may take time for people in a professional society to understand the value of a patient forum and be comfortable with patients on the board.

Co-producing a research project

In 2018 we were awarded funding by the UCL Centre for Co-Production (now Co-Production Collective) as one of its first pilot projects which you can read more about in on page 7 and 8 of the Pilots Report 2018-2020. During the pilot project we met two community members with lived experience Heather and Brian and we have been on a transformational learning journey with them ever since. After the pilot project they supported our successful bid for funding for a research project on oral health and diabetes.  

We know from our group’s research that treatment of gum ill-health can improve blood sugar control in diabetes by as much as adding a second diabetes medicine. But these studies were carried out in tightly controlled conditions. Co-production has been valuable in helping us to redesign the research to test it in real world conditions.

The project developed important alliances with local communities, the voluntary and community sector and health organisations and businesses which would have been difficult to establish otherwise. The insights from these groups are invaluable, as gum ill-health, like other conditions that are not spread through infection disproportionally affects communities facing social and economic disadvantage and deprivation. These conditions tend to be of long duration and are the result of a combination of genetic, social, physiological, environmental and behavioural factors (such as diabetes, cardiovascular disease etc.). People with gum ill-health (and type 2 diabetes) are less likely to access care but represent the majority of the seldom-heard community who are not usually involved in clinical research. Co-production has helped my team to understand; how to recruit a more diverse group of participants, what is most important to them as outcomes of care (for instance less need for medications) and barriers to participation throughout the life course of a study. Going out into the community, rather than expecting them to come us has been important learning here. You can find more reflections about this project in the Co-Production Collective Pilot Projects Learning Report which forms part of the Value of Co-Production Research Project.

Co-production of a systematic review

Patients from UCL Hospitals have also helped us to co-produce publications. These have included state of the art summaries of evidence (systematic reviews) commissioned for a European Guideline on periodontal health. Working via Microsoft Teams (during the pandemic) helped to make meetings accessible. The challenge here was to manage the constraints imposed by the requirements of the commission such as setting up which treatment outcomes were the most important to review. We managed this with pragmatism, discussing the issues in the review as well as ensuring prominence to other outcomes which the co-authors felt were of high priority. It is the first systematic review in periodontal health to be co-produced (and possibly more broadly within oral health) and the evidence was directly incorporated into the guidelines. Furthermore, it has increased awareness in the oral health community of how people with lived experience can successfully contribute to producing evidence.

Organising a patient group to advise on commissioning standard

As part of the diabetes-gum health project I was invited by NHS England to organise a patient group to advise on how a new diabetes guideline could be brought into action within the NHS. The meeting at Department of Health HQ, Skipton House, was an enlightening experience for all of us. The people with lived experience (including from our UCL group and the British Society of Periodontology and Implant Dentistry) were forthright but clear on many aspects of how this could be achieved. What came of this meeting was that if people with diabetes who develop periodontitis have to pay to manage this complication, it would be unsuccessful, especially since other potential complications including neurological, cardiovascular, eye, and foot health are available as free NHS care. The result was a change to the pilot testing of the pathway with provision of free oral health care. We await the final evaluation of the pilot to learn the lessons for national implementation.

Designing an intervention study

Our work in oral health in elite sport generated robust data that showed that elite athletes were disadvantaged by participating in sport in terms of both a high occurrence of oral ill-health and self-reported negative impacts on training and performance. Our next step was to design research to test how to improve health and performance. But creating such a study in this high-performance environment (GB Cycling, GB Rowing and a premiership rugby team) is certainly challenging. We were successful in achieving this by thinking broadly about who should be involved in developing the study which in the end included athletes, coaches, performance directors and sports medics, scientists and nutritionists from the teams. Their collaboration generated a sense of ownership within the teams as well as developing the intervention based on our preliminary research of their health behaviours and potential targets for change. Considering that participants were required to attend for three-visits over four months including of oral, nasal and poo samples, we had over 90% complete data on the 62 athletes which is remarkable commitment by them and important to ensure high quality research. Without the involvement of the teams in designing the study, I doubt we would have got close to this.

Patient involvement in the development of a core outcome set

Our most recent project was to lead the patient involvement in the development of a core outcome set for dental implant research. Core outcome sets are recommended minimum standardised outcomes to assess the most important benefits and harms of care. Traditionally, clinical experts have judged what is important with limited involvement of people with lived experience. For this project we set up four patient groups representing low-middle income economies (China and Malaysia) and high-income economies (Spain and UK). Again, during the pandemic we were able to meet online to agree and calibrate methods. We successfully ran focus groups in the four countries with 31 people participating, identifying 34 possible outcomes. 17 patients participated in three rounds of online surveys (Delphi surveys to develop agreement on both the patient identified outcomes and those from clinical experts) and again in the final consensus meeting with a further 19 clinical experts. The final 11 outcomes consisted of 7 (64%) which were broadened by patient input and one which was totally novel arising from the patient group. What we learnt from this project was that involvement and development of consensus across geographically and culturally diverse communities could be achieved. Without doubt the pandemic has greatly increased peoples’ confidence to use online platforms. However, we also learnt about supporting individuals to use the tech and not to make assumptions about such skills.

My overall learning

We’ve learnt a lot over the last ten years and made many mistakes. It’s also clear from the evidence, that our journey in co-production and patient and public involvement (PPI) has achieved important impacts for health and wellbeing. There are fantastic opportunities at UCL to support these aspects for teachers and researchers. I would like to say a big thanks to those that have been so patient and generous to me with their time and expertise. In particular, Laura Cream and her team in UCL Engagement (and its previous incarnations), Niccola Hutchinson-Pascal and the Co-Production Collective community as a whole, and Rosamund Yu, at the Joint Research Office. I would also like to give a huge shout out to Professor Francesco D’Aiuto and my wonderful colleagues in the Unit of Periodontology, Heather Johnson and Brian Potter for all their work as community co-researchers in our group, to Simon Denegri OBE (Academy of Medical Sciences), Derek Stewart OBE (Patient Advocate) and Steve Cross (@ScienceShowOff) for their provocative, wise, and thoughtful guidance.

If you have any comments or thoughts about this blog please get in touch - email: i.needleman@ucl.ac.uk, Twitter: @IanNeedleman

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