Patient involvement - resources
Here are links to evidence-based resources on patient involvement, patient education, and patient information and choice. The resources are intended to support healthcare practitioners in delivering these initiatives and providing patient education, and to inform people with diabetes about these initiatives.
You may also want to refer to information about the national service frameworks and strategies across the UK.
Some of the resources listed below are in PDF format - see how to access PDF files.
Patient and public involvement
Diabetes UK (2011) Making involvement happen
This resource is designed to help organisations involve people with diabetes in order to improve diabetes care. It includes practical tips, examples from practice and case studies.
Diabetes UK (2011) User Involvement in Local Diabetes Care
This project, undertaken by Diabetes UK and funded by NHS Diabetes, applied and tested approaches to involving people living with diabetes (users and carers) to influence local diabetes care in three local NHS organisations. These approaches have been developed by the Diabetes UK user involvement team. An evaluation report on the project is available. There is also a series of key lessons on preparing an organisation to involve; planning involvement; running a user group; evaluating a user group.
Diabetes UK (2007) Involving children and young people in designing diabetes services
A Diabetes UK project which has drawn together examples of involving children and young people. The document aldo highlights resources for further information.
Diabetes UK (2006) Position statement. Involving people with diabetes in health care planning and service development
The involvement of people with diabetes in the design, planning, delivery and monitoring of local diabetes care services should lead to improved care outcomes.
Diabetes UK (2006) Shared Practice Example: Diabetes Community Support Worker - Developing User Involvement
Shared practice example looking at the role of the diabetes community support worker and how increased engagement in the community has increased the quality of life enjoyed by those with diabetes.
Diabetes UK (2005) Care Recommendation. Guidance for PCTs (Primary Care Trusts) User Involvement
Guidance for primary care trusts to help ensure the development of successful user involvement.
National Diabetes Support Team (2007) User involvement and diabetes services: involving voices that are not normally heard (PDF 422.88KB)
This report offers guidance on reaching those people who, for a number of reasons, have not traditionally become involved. It includes guidance on working with particular groups such as people from different cultures, people with disabilities, refugees and asylum seekers, disadvantaged communities.
RCN Clinical Governance online resource: Patient focus
This theme within the resource includes general information about patient and public involvement across the UK. This includes information about:
Warwick Diabetes Research and Education User Group
This is a group of lay people who have an active interest in control of diabetes and the care of people living with diabetes, and assist the Warwick Diabetes Research Team in all aspects of diabetes research. This page on the University of Warwick website provides details of the User Group and the latest newsletter.
Patient education
BMJ: Effectiveness of the Diabetes Education and Self Management for Ongoing and Newly Diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cluster randomised controlled trial
The aim of this research study published in the British Medical Journal was 'to evaluate the effectiveness of a structured group education programme on biomedical, psychosocial, and lifestyle measures in people with newly diagnosed type 2 diabetes'.
Cochrane Review: Culturally appropriate health education for type 2 diabetes mellitus in ethnic minority groups
This review aimed to assess the effectiveness of culturally appropriate diabetes health education on important outcome measures in type 2 diabetes.
Cochrane Review: Group based training for self-management strategies in people with type 2 diabetes mellitus
This review assessed the effects of group-based, patient-centred training on clinical, lifestyle and psychosocial outcomes in people with type 2 diabetes.
Cochrane Review: Individual patient education for people with type 2 diabetes mellitus
This review aimed to evaluate the effectiveness of individual patient education on metabolic control, diabetes knowledge and psychosocial outcomes.
Desmond
Desmond stands for Diabetes Education and Self Management for Ongoing and Newly Diagnosed and is a collaborative group working together to improve opportunities for learning and support for people with diabetes and the healthcare professionals involved with them. The Desmond programme for people newly diagnosed with type 2 diabetes is used widely across the UK. This website provides information about Desmond and associated training and research.
Diabetes UK (2003) Care recommendation: Structured patient education
Care recommendation from Diabetes UK highlighting the importance of patient education to the self-management of diabetes.
Diabetes UK: Diabetes awareness toolkit
This toolkit is designed to assist key workers in the development of diabetes awareness days and help people to understand diabetes and the complications involved.
Diabetes UK Northern Ireland (2008) Regional audit of structured diabetes education in Northern Ireland (PDF 188KB)
The aim of the audit was to assess group structured diabetes education against nine standards drawn from the Diabetes UK Position Statement 'Structured education for people with diabetes' and recommendations made by the National Institute for Health and Clinical Excellence (NICE).
Dose Adjustment for Normal Eating (DAFNE)
DAFNE is a skills-based structured education programme in intensive insulin therapy (IIT) delivered by specially trained diabetes specialist nurses and dieticians. This website contains information on the programme for healthcare professionals and for people with type 1 diabetes.
NHS Diabetes (2011) Knowledge & Information Repository: Structured education and diabetes (PDF 424KB)
The purpose of the Knowledge and Information Repository (KIR) is to provide summaries of the latest guidance and important research on specific key topics.
NICE quality standards: Diabetes in adults
NICE quality standards are a set of specific, concise statements that act as markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions.
Statement 1: People with diabetes and/or their carers receive a structured educational programme that fulfils the nationally agreed criteria from the time of diagnosis, with annual review and access to ongoing education.
NICE Technology Appraisal (2003) Diabetes - patient education models
The findings from this technology appraisal are still relevant to type 1 diabetes. However, the recommendations relating to type 2 diabetes have been replaced by recommendations in the type 2 diabetes clinical guideline published in May 2008.
Department of Health (2005) Structured patient education in diabetes
This report from the patient education working group sets out in detail the necessary ingredients for developing a high-quality patient education programme.
Patient information
Department of Health (2010) NHS Constitution
The NHS Constitution which sets out patient’s rights and responsibilities underlines the right to choice and to information to support choice.
Department of Health (2006) Our health, our care, our say: a new direction for community services
This White Paper sets a new direction for the whole health and social care system and a shift to providing services that are more personalised and ensuring real choice. It includes proposals for introducing information prescriptions for people with long-term conditions.
Discern: Quality criteria for consumer health information
Discern is a brief questionnaire which provides users with a valid and reliable way of assessing the quality of written information on treatment choices for a health problem.
NHS Choices: Your health, your way: Your NHS guide to long-term conditions and self care
Information to support self care for people with long-term conditions is arranged under headings which include: courses and support, healthy living, help at home, money and legal.
NHS Scotland: My diabetes my way
This site has been developed in Scotland to provide information and support to people who have diabetes and their families, carers and friends.
Self care
BMC Endocrine Disorders: Self-care coping strategies in people with diabetes: a qualitative exploratory study
This study explored patient perceptions of diabetes self-care” with particular reference to the burden of self-care and coping strategies among patients”. The study identified different patient types and different self-care coping strategies “influenced by their self-care health value” and suggests that self care protocols should be tailored to complement the different patient types”.
Department of Health: Long term conditions
This area of the Department of Health’s website provides information on long term conditions policy. News, events, policy documents, non-clinical guidance, links and other resources. This includes resources on self care. Further resources are brought together at Selfmanagement.co.uk: Self care resources.
Healthtalkonline: Shared decision making
This section of the healthtalkonline website draws together themes around decision making from the database of interviews previously collected by healthtalkonline researchers. This includes interviews with people who have chronic health issues. The themes are: What is shared decision making? Different types of decisions settings and participants; Different types of patient/doctor relationships; What might go wrong when decisions are not shared?
NHS Diabetes: Supporting self-care of diabetes
NHS Diabetes “works to raise the quality of diabetes care in England by supporting and working with the healthcare community and people with diabetes”. One of the NHS Diabetes areas of work is supporting self-care through a number of workstreams. This page also links to relevant publications and tools published by NHS Diabetes such as Partners in care: a guide to implementing a care planning approach to diabetes care and Diabetes and care planning: how to make the most of your appointment.
NICE quality standards: Diabetes in adults
NICE quality standards are a set of specific, concise statements that act as markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions.
Statement 3: People with diabetes participate in annual care planning which leads to documented agreed goals and an action plan.
For other resources relating to patient involvement in care planning and self care see Primary care resources.