Improving patient experience and outcomes through PHRs

The True North 'Supported Self-Management and Follow-up Care' project, which you might see branded as True^NTH, was a service improvement initiative in 5 NHS prostate cancer treatment centres in England.

Personal Health Records (PHRs) played a significant role.

This project was led by the University of Southampton and started in 2014. It offered:

• follow-up outside of outpatient clinic, known as remote follow-up
• access to a PHR for men who had completed treatment for prostate cancer

The project found that:

• men on the new follow-up pathway had better outcomes than those on traditional follow-up
• PHRs contributed positively to patient experience
• PHRs played an essential part in the delivery of follow-up care

These findings have been published in BMC (BioMed Central) Cancer, as ‘Follow-up care after treatment for prostate cancer: evaluation of a supported self-management and remote surveillance programme’.

It’s rare to see this level of evaluation of PHRs and the University of Southampton is keen to see more of it.

The True North follow-up pathway was evaluated against a comparator group that was experiencing traditional models of follow-up care. Both groups included around 300 men.

Evaluation showed that the True North model of care is at least comparable, in terms of outcomes reported by patients, to follow-up care based on appointments.

The cost of the service was evaluated over the first eight months of service. The True North model cost less to deliver than traditional outpatient follow-up.

True North showed positive impact on men’s cancer-related problems. There was significantly greater improvement than the comparator group, at the traditional four-month follow-up point, in:

• post-treatment bowel problems, which was also seen at eight months
• psychological wellbeing
• severity and the number of unmet survivorship needs

Men in the True North group tended to rate their outcomes more highly than men in the comparator group and felt the model of care was acceptable.

They were also likely to be more satisfied with follow-up care compared to the comparator group. This difference was clearest at the four-month follow-up point.

Men are often left with physical needs after treatment, such as:

• urinary and bowel problems
• hot flushes
• psychological needs related to sexual dysfunction

True North aims to provide care that targets men's needs better and reduces the number of clinic appointments.

It offers what is known as 'personalised survivorship care', through remote monitoring and supported self-management.

This is achieved through using the My Medical Record (MyMR) PHR, originally developed by University Hospital Southampton.

Men taking part in True North:

• attend a 4-hour group workshop to prepare them for self-management
• do not have scheduled follow-up appointments

Their follow-up care for urology, oncology or both happens remotely through the PHR, with access for both men and the prostate cancer team.

This enables:

• regular blood samples to be taken at the men’s GP or local hospital
• results to be transferred to the PHR directly from the pathology laboratory
• men to access results through the PHR as soon as they are available

Men can also:

• view personal information like treatment summaries and care plans
• complete a Holistic Needs Assessment known as a Health MOT
• message their clinical team securely

The care team uses virtual clinics to review results and completed Health MOTs. They only contact the man if there is any concern.

This True North example provides evidence of benefits to patients.

It should:

• show there are clear benefits from making PHRs a core element of service redesign
• encourage others to invest in PHRs