|DIMPLE – Diabetes Improvement through Mentoring and Peer-led Education Project
The nature and extent of the Type 2 Diabetes problem has become increasingly worrying for those involved in healthcare. There is an ever-rising incidence of people diagnosed with the condition in the UK and the unhealthy lifestyle factors that underlie the condition seem to characterize modern day living. Finding innovative ways to address this growing health problem has never been of more interest and exigency to public health. Proper self-care and self-management is necessary for the successful prevention and management of the condition. This report explores a peer-led approach to improving and spreading self-care and self-management in diabetes, and follows the journey of three peer-led education projects collectively called DIMPLE. DIMPLE was co-created by local residents living with diabetes and the projects have been delivered over the last 18 months in Hammersmith and Fulham and in Harrow and are already expanding into Kensington and Chelsea and Westminster. This research suggests that there are significant benefits to be found in using peer-led approaches to tackle the Type 2 diabetes problem and offers insights as to how NHS organizations can better reach those at risk and bring about appropriate behaviour change.
Diabetes is one of the biggest health challenges facing the UK with a huge increase in the number of people diagnosed with the condition. Since 1996 the numbers of people diagnosed have increased from 1.4 million to 2.9 million1 and by 2025 it is estimated that five million people will have diabetes; roughly 90% of these cases being Type 2 diabetes. Prevalence of Type 2 diabetes is highest amongst South Asian, Arab, Chinese, African and African Caribbean communities. Obesity is the most potent risk factor and deprivation is also intimately linked with diabetes for it is associated with higher levels of risk factors such as: obesity, physical inactivity, unhealthy diet, smoking, poor blood pressure control and other life stressors. Diabetes can lead to complications such as heart disease, stroke, blindness and kidney failure if left untreated. These can be debilitating for the patient and costly for the provider. Diabetes also requires effective self-management for positive health outcomes to be achieved and can place myriad demands on the patient and their families.
A report on diabetes in the UK, by Diabetes UK, recommends that in order to ‘curb this growing health crisis and see a reduction in the number of people dying from diabetes and its complications, we need to increase awareness of the risks, bring about wholesale changes in lifestyle, improve self-management among people with diabetes and improve access to integrated diabetes care services2’
In the NHS Diabetes National Service Framework, both the prevention of diabetes in people at risk of diabetes and the identification of people with diabetes comprise two of the twelve standards3.The findings of the UK Prospective Diabetes Study found that a change in negative lifestyle patterns, such as consuming a low-fat, high fibre diet and exercising could reduce the risk of one developing type 2 diabetes4. The longevity of lifestyle changes in preventing onset of diabetes has also been shown in the China Da Qing Diabetes Prevention Study. Both increased exercise and/or improved diet led to a lower incidence of diabetes occurrence in the intervention groups (7%) than the control group (11%), further reiterating the importance of lifestyle intervention in the primary prevention of type 2 diabetes5 In the Finnish Diabetes Prevention Study, an intensive lifestyle modification programme yielded long-term changes in participants’ physical activity levels and diets, as well as biochemical and clinical measurements6. This reinforced the message of previous studies that highlighted that non-pharmacological methods consisting of lifestyle modification are efficacious and also far more cost-effective in reducing diabetes risk.
Of most relevance to this paper is the role of patients in delivering quality improvement in diabetes care and self-management. Such quality improvements include the provision of education to patients, with the most successful programmes being Dose Adjustment for Normal Eating (DAFNE, for type 1 diabetes) and X-PERT (for type 2 diabetes). The promotion of self-management is another example of patient targeted quality improvement. With diabetes being a lifelong condition, patients require the ability to reduce their risk of complications as much as possible. Both education and self-management are vital in order to achieve this.
There are over 20.000 people diagnosed as living with diabetes within the tri-borough area of Hammersmith & Fulham, Kensington & Chelsea and Westminster. There are approximately 6,000 on the GP register at high risk of developing diabetes and approximately another 8-10,000 living with the condition undiagnosed and who are thus at risk of poor health and diabetes complications. There are also large BME populations who experience higher incidence and are at higher risk of developing Type 2 diabetes 7 than the general population.
2009 QOF-recorded prevalence of diabetes in H&F was 3.2% of the GP registered population, or 6000 people. The PBS modelled prevalence was 4.1%, indicating 1,500 people undiagnosed with diabetes. 2009 QOF recorded prevalence in Harrow was 5.46% that is 11,800 people. However, the YPHO modelled prevalence was 6.30% (13,606) – a gap of 1806 undiagnosed with diabetes, similar to H&F. The difference in prevalence is due to different population groups.
The National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for North-West London (NWL) worked in partnership with, Hammersmith and Fulham PCT and Harrow PCT, CITAS and Diabetes UK in order to deliver a range of diabetes management and peer-led education programmes under the acronym of DIMPLE. The project consisted of three volunteer programmes entitled Peer Educators, Diabetes Mentors and Diabetes Champions.
DIMPLE was a challenge of both engagement and behaviour change. The principal aim of DIMPLE was to improve and spread self-care management for people with, or at risk of Type 2 Diabetes. As well as supporting diabetes patients it also had a strong preventive focus. This intended improvement was seen to involve four main factors: community members’ ability to prevent/manage symptoms and risk factors, access to appropriate medical services, patient ability to self-manage the condition and compliance with self-management techniques. In those reached by DIMPLE we intended for improvements to be seen in a range of patient outcomes such as: health-related quality of life, physical condition and psychological condition.
DIMPLE came about from the ideas of Diabetes Service User Groups and LINk’s members in Hammersmith and Fulham and Harrow. They wanted to address the shortage of available services providing support and education in self-management of Type 2 diabetes as well as a lack of awareness in local communities around prevention and earlier detection. They wanted to create a solution that was community driven, and in line with DoH guidance suggesting peer-to-peer support as one of the most effective ways of encouraging behaviour change. There was also evidence that peer support interventions might provide a flexible and low-cost way to supplement existing support for those with diabetes.
Peer support has been defined as support from a person who has experiential knowledge of a specific behaviour or stressor and similar characteristics as the target population.8 Within a peer support intervention people with a common illness experience share knowledge and experience that others, including many health workers, often cannot understand. Success of peer support in relation to behaviour change is hypothesised to be due in part to the non-hierarchical, reciprocal relationship that is created through the sharing of similar life experiences.
The three DIMPLE interventions, diabetes champions, peer educators and mentors, were all iterations of this idea. Relevant theoretical research on peer-led education, self-management and primary prevention can be found in the appendix of this report.
The research focus of the project concerned whether DIMPLE could provide a viable model for service providers approaching health improvement in Type 2 Diabetes. This centred on the effectiveness of the peer-to-peer support interventions in achieving diabetes health improvement in both its preventive and supportive aspects, and looking at the cost/resource implications of the projects in the form of a social return on investment (SROI). We also investigated the role of patient and public involvement (PPI) in designing and delivering the project and issues of sustainability in the current health-care climate.
Locally we felt there was a need and an advantage to focusing on BME communities and health inequality areas. Considered high-risk and hard-to-reach, nowhere were the challenges of Type 2 diabetes for both the patient and provider more strikingly represented. When previously working with BME groups in H&F we had seen how traditional top-down approaches to health improvement and health promotion could be ineffective and inefficient; they often failed to properly engage the hard-to-reach, and could encourage a view of patients as passive recipients of care. Given the self-care and self-management requirements for living successfully with diabetes it was seen as essential that DIMPLE support those living with the condition as active-decision makers in their own health.9 We also wanted to invest in local people to deliver the DIMPLE projects and by doing so tap into the social capital inherent in our local communities. These considerations helped form the points of departure and innovation for DIMPLE, which we hoped would achieve outcomes that were locally driven, responsive and sustainable.
Planning the intervention
The main aim of the diabetes champion’s project was to train local people as volunteers to raise awareness in their communities about diabetes.10The idea being that the volunteers engage with other community members to share key health messages to bring about increased knowledge and awareness and appropriate behaviour changes. The champion’s project was a path to prevention through health promotion.
The key messages we wanted champions to convey were: the risk factors associated with diabetes, the importance of healthy lifestyles, how to reduce or delay the possibility of developing diabetes, and how to be tested for diabetes. We wanted the volunteers to:
either have diabetes or be affected by diabetes e.g. a carer or family member of someone with diabetes.
have links with people and groups in the community,
be able to give a talk to local communities both in English and in their own community language - In recruiting multi-lingual champions we hoped we would be able to better target high risk communities - and
show strong personal qualities such as trustworthiness, reliability and a caring nature.
We wanted to train volunteers in outreach skills both to enable them to better engage people and also for their own skills development. Champions would participate in a range of local community events and arrange events of their own, e.g giving a talk at a coffee morning or a running an awareness session at a local faith group.
Of the three projects the champion’s project in particular was aimed at targeting BAME communities. We planned to recruit a majority of champions from BAME communities with the hypothesis that increased awareness and behaviour change would result. The project was set-up at the beginning of 2011 and was influenced by the community champion’s project in Hammersmith & Fulham which provided a blueprint for planning and delivery. Hammersmith & Fulham and Harrow worked in close partnership designing the project which was delivered across both boroughs.
Diabetes Peer Educators
The peer educators’ project developed from feedback from people living with diabetes who wanted to be involved in educating and supporting other patients. We looked at how we could develop diabetes educators to work in collaboration with clinicians and services that were already delivering structured education courses such as X-Pert11 and Introduction to Diabetes Self Management (IDSM), a taster for X-Pert. Due to the collaborative nature of the project we set up an operations group to agree clinical governance, IT governance and quality procedures, and to ultimately support ongoing discussions with clinicians and managers leading the clinical service about how best to deliver the courses. We hoped that peer educators would be able to motivate and improve self-efficacy in course attendees thereby improving their ability to self-manage, with the additional benefit of potential for reducing clinician workload.
Diabetes Peer Mentors
The peer mentor project came about from evidence that diabetes patients wanted more support and needed more time than was available in primary care consultations. We developed an idea for a diabetes mentor scheme whereby referrals could be made to a mentor - someone already living with diabetes - who would offer emotional support to help others cope better through active listening skills. This project was created from scratch and initially we needed to find a local education qualification in mentoring in that could be adapted for diabetes mentors and for their subsequent recruitment, training and accrediting. There were also considerations of how diabetes mentors would link in effectively and efficiently with other primary care services such as GP’s.
DIMPLE raised ethical concerns mainly regarding the volunteer workforce and the research methods used to evaluate the project. We needed to ensure that volunteers were fully CRB checked as they would be working closely with members of the public, that we provided standardised training with the scope and boundaries of the volunteer roles clearly delineated as distinct from those of professional health workers, and that they were equipped for work in the community. This last requirement necessitated delivering outreach skills training, producing a handbook and providing ongoing supervision to assess performance and training needs. Patient confidentiality and information governance issues had to be worked through particularly for the peer-educator and peer-mentor projects. With regard to the evaluation, as the DIMPLE programme was run as a service improvement initiative and not as a research project, Hammersmith and Fulham PCT determined that Ethics Approval would be waived. Issues pertaining to data protection, confidentiality and secure storage of information were given full consideration.
Planning the study of the intervention
We used process mapping to understand how the patient process of living with diabetes compared to the clinical care pathway. We used an Action Effect Diagram (AED) to develop and clarify a shared aim for the projects, along with specific primary and secondary outcome measures. This provided a visual map of the planned interventions, processes and their anticipated effect on outcomes.12 In order to obtain relevant process measures and regularly review the progression of the project CLAHRC also developed a bespoke web based platform for quality improvement.
All three interventions were expected to bring about improvements by virtue of the peer-to-peer support relationship. There was evidence to suggest that peer support provided a dynamic conducive to behaviour change. We hypothesised that this might prove particularly true with respect to a condition like diabetes which requires education and support in order to master and sustain complex self-care behaviours13. The need for a broad approach to facilitating successful behaviour change has been increasingly recognised14and key ingredients for change have been identified; self-efficacy is the best predictor of engagement in health-protective behaviour and autonomy is also seen as critical; the more we seem to tell people what to do, the more we invite resistance15
We hypothesised that the champions would be able to better reach and engage those at-risk of diabetes. As local community members they would make the key health messages and information on diabetes socially and culturally relevant. We hypothesised that peer educators would enhance the successes of clinician led self-management courses. They would serve as positive role models, successfully employing the techniques and strategies taught on the course and thereby improve confidence and self-efficacy in participants. Similarly we hypothesised that peer mentors, through active listening and support, would improve confidence and self-efficacy in patients; again improving patient ability to self-manage.
As the most established intervention, evaluation has predominantly focused on the DIMPLE Champions project. Evaluation has also been undertaken for the peer educators project and to a lesser extent the peer mentors project. The projects were all collaborative and community delivered so it was essential to develop a culture of ongoing evaluation through stakeholder engagement. We employed a dedicated volunteer coordinator to oversee the DIMPLE projects and we formed a cohesive operations group including service users, third sector organisations, Public health and CLAHRC which steered the projects.
Methods of evaluation
The impact evaluation on the champion’s project was carried out as a masters in Public Health, entitled “Diabetes Prevention, Peer-Led Education and Self-Management Programmes (DIMPLE): an Impact Evaluation of the Champions Project.” It was primarily qualitative in nature with the main methods of data collection being the self-reporting of project participants and event attendees via questionnaires and focus groups. This involved an assessment of the impact of the project on both the Diabetes Champions themselves and the public with whom they interacted, in terms of a range of outcome variables: changes in diabetes knowledge (its symptoms, signs and risk factors, sources of help and support etc) health behaviours (eating habits, exercise frequency) and psychological factors (self-confidence and psychological wellbeing.) For the Diabetes Champions, changes in confidence managing diabetes (if diabetic), professional skillset and social skills were also assessed.
Two questionnaires were designed; one for the Diabetes Champions and another for the public event attendees. Attention was given to simplicity of language and avoiding leading questions.16 We decided not to field baseline data as we thought this might encourage a smaller sample size. Evidence existed in the literature review that the effects of peer led-interventions on behaviour change had been validated through use of standardised questionnaires. ‘Survey Monkey’ was used to produce an online version of the questionnaires and Public Event Attendees also had the choice of completing the questionnaire via telephone interview with the researcher.
Two focus groups were held, with each focus group containing a total of 8 people; the recommended number in order to gain a diverse range of views, to encourage participation between attendees and to avoid precluding quieter individuals17. For the Diabetes Champions focus group, purposive sampling was used to recruit 24 Champions who had held most events and were considered more willing and able to contribute to a group discussion.18 A range of genders, ethnicities and age groups were sought but due to a sampling limit of 8, a wide representation could not be achieved. Convenience sampling was used to recruit participants for the Public Event Attendee focus group; inviting members of a local coffee morning, held at Askew Road, Hammersmith, back to a subsequent future focus group in July 2012. As with the interviews, each focus group was recorded on a Dictaphone for future analysis.
A form of cost/benefit analysis called a social return on investment (SROI) was conducted over a 15 month period between April 2011 and July 2012. A SROI is a ‘sum of benefits’ calculation; the sum total benefits of the project are divided by the total cost of the project, this produces an SROI value. It permits measurement of the social impact that health interventions have on their target population19. It assigns a return to the initial investment in monetary terms and enables the full value of an intervention to be captured. It was considered important to carry out an SROI for the DIMPLE Champions project as primary prevention and health promotion programmes deliver benefits beyond simple economics. With respect to the DIMPLE champions project notably: benefits of developing a local volunteer workforce, reduction in clinician workload and corollary public health benefits deriving from improved lifestyle choices as a result of DIMPLE interventions.
The DIMPLE peer educator’s project has been initially evaluated by way of a range of specifically designed questionnaires for course participants and educators themselves. End of course questionnaires were devised to evaluate patients’ satisfaction with having a peer educator as part of the teaching team. Participants had to indicate the extent of their agreement with a range of statements such as: ‘I felt the Peer Educator had a good understanding of how it felt to be someone with Diabetes,’ ‘I had confidence in the Peer Educator delivering the sessions,’ ‘I was happy to be taught by a Peer Educator,’ with a score given between 1 – 5. We also scored empowerment questionnaires which were given on the first day of the course (Pre) and last day (Post). The questionnaires assessed changes in levels of empowerment and the role of peer educators as experienced by course participants. Telephone interviews with both educators and clinicians who delivered the self-management courses were also conducted. The peer mentor project is in the early stages of analysis, with low referrals precluding significant analysis at this point.
We also worked closely with CLARHC to design evaluative methods and tools to be used throughout the delivery of DIMPLE. These included plan-do-study-act cycles (PDSA’s) and web-reporting tools. PDSA’s enabled us to test and trial aspects of the interventions in an iterative way. Through the web tool we were able to record qualitative data in the form of feedback from volunteers and key stakeholders, and quantitative data against variables such as numbers of champion events held and number of people and patients reached by DIMPLE. As stated, discussion feedback and interviews with key stakeholders were integral to evaluation.
For the Diabetes champions impact evaluation and peer educators evaluation, multiple sources of data were collected combining quantitative with qualitative techniques. The combination of data collection methods is termed methodological triangulation20 and is widely accepted to increase the internal validity of a study21. Within healthcare and public health research qualitative methods have achieved renewed prominence since the definition of quality within the NHS and public health systems was modified to include the opinion of the lay-person22. Descriptive statistics were used to arrange and display the data in the form of simple counts, percentages, ratios and cross tabulations of both demographic and main variables. Thematic analysis was used to identify repeated patterns of meaning when listening to focus group recordings. This involved developing thematic codes based both on postulated outcomes and readings of the data and then connecting and grouping the codes into themes. The top four occurring themes from each focus group were reported in a narrative format and via the use of direct quotes.
The Social Return on Investment (SROI) analysis in this report comprised a total of 6 stages: establishing scope and identifying key stakeholders, mapping outcomes – involving a theory of change impact map, evidencing outcomes and giving them a monetary value23, establishing impact24, calculating the social return on investment, and finally reporting using and embedding. This last stage involved recommending how NHS NWL can share the results of the report, disseminate the results to stakeholders and inform commissioners of the value and future potential of the Diabetes Champions project.