Patient Hand-Held Diabetes Document

Background

The Patient-Held Record (PHR) or Patient-Held Pathway (PHP) is owned by the patient and presented to hospital and community staff for completion at each attendance. It includes information on the patient’s diagnosis, treatment and support groups. PHRs have been used to improve communication between and within levels of care, and to promote patients’ involvement in their own care ¹ .

The PHP for Diabetes, introduced by the County Durham and Darlington Diabetes Network, is also completed by the patients themselves and is designed to help patients effectively manage and understand their diabetes by recording progress towards goals agreed with diabetes team staff.

Currently, we are piloting the Patient Hand-Held Diabetes Document in County Durham and Darlington. This involves at least two GP practices in each of the PCTs in the County Durham and Darlington area and within hospital settings. Patients who have been recently diagnosed with diabetes (both type 1 and 2) are being provided with and encouraged to use the PHP for diabetes.

The Patient Hand-Held Diabetes Document is an informal record completed by professionals, patients and carers within a primary and secondary care setting.

What is the problem you are trying to solve?

To empower patients with diabetes to effectively manage their long term condition, and to encourage a closer relationship between patients and healthcare professionals

What local organisations are involved?

Primary care practices and hospitals in the County Durham and Darlington area

How many people are running this project and who are they?

The team comprises: Mark Jones (diabetes network manager); Dudu Sher-Arami (public health trainee); diabetes specialist nurses in the community and acute hospital pilot areas; practice nurses within the pilot areas; GPs within the pilot areas; and patient representatives.

What local population are you targeting?

We are targeting recently diagnosed type 1 and type 2 diabetes patients living in County Durham and Darlington

How many people are you targeting?

Not known

Interventions

What interventions are you using to address the problem?

The County Durham and Darlington Diabetes Network has identified that a PHR should:

• Set out how a person’s diabetes is to be managed until their next review. This will foster a greater understanding and ownership of the goals of diabetes care;
• Include an agreed care plan, covering education and the personal goals of the person with diabetes;
• Identify health, social and educational needs, how they will be met and who will be responsible; and
• Identify the named contact.

Is the project design based on evidence? If so, please state reference.

Although there have been few published evaluations of PHRs or PHPs within diabetes care, they have been used in other fields. These include oncology, mental health and maternal and child health. Evaluation of the use of PHRs has mainly focused on patient and professional perceptions regarding the advantages and disadvantages of the record. Published evaluations have found the following benefits:

• Reduction in drug errors ² ;
• Reduction in correspondence required;
• High level of agreement and accuracy between PHR and medical notes;
• Aid user involvement in services and care;
• Aid to communication between patients and health professionals ¹ ;
• Aid to communication between health professionals and different parts of a service ¹ ;
• Improved involvement of patients in their own care ¹ ;
• Improved feeling of involvement in care ¹ ; and
• Improved continuity of care (e.g. for use by out of hours admissions, GP visits or emergencies during holidays).

Outcome

What outcomes or planned outcomes are you measuring?

We are measuring patient and professional perceptions of the benefits of the document and whether diabetic control is better when the document is used. We are also measuring cost effectiveness.

Do you have any outcomes or results yet? If so, what are they?

Evaluation of this project will commence in January 2007.

Is your project relevant to a government target or guideline?

The National Service Framework (NSF) for Diabetes ³ aims to: "ensure that people with diabetes are empowered to enhance their personal control over the day-to-day management of their diabetes in a way that enables them to experience the best possible quality of life". The NSF recommends the introduction of patient held or accessed records to facilitate self care. It is stated that people who take a greater responsibility for the management of their diabetes have been shown to have reduced blood glucose levels, with no increase in severe hypoglycaemic attacks, a marked improvement in quality of life and a significant increase in satisfaction with treatment.

PHRs have been used in a number of fields including mental health, oncology, maternal and child health. However, despite the NSF recommendation, there have been no published studies regarding the use of PHRs for diabetic patients.

Feedback

What obstacles did you have to overcome to set up this project?

GPs expressed concern regarding confidentiality of the patients, and patients became worried about what information was included in the document. It was therefore agreed that what is recorded should be discussed and agreed with the patient.

Some patients may feel stigmatised or patronised or that they are continually being reminded of their illness.

What have you learned about the project so far?

We have learned that this project should have been run with a clear project plan and co-ordinated so that all pilot sites commenced at the same time. Feedback from some patients who are in receipt of the pathway have been very positive and once evaluation has been completed we will be in a position to determine whether to roll this pilot to all practices within County Durham and Darlington.

What would you do differently?

An agreed date to commence the pilot should have been agreed, along with a clear project plan, including involvement and sign up from key stakeholders

References:

1. Drury M, Harcourt J, Minton M. The acceptability of patients with cancer holding their own shared-care record. Psycho-Oncology 1996; 5:119-125.
2. Hooker L. Williams J. Parent-held shared care records: bridging the communication gaps. British Journal of Nursing 1996;5(12):738-41.
3. Department of Health. The National Service Framework for Diabetes. 2001. Available at www.dh.gov.uk (Search for 2001, accessed 5 April 2007).