Evaluation of Patient Access to People With Cystic Fibrosis (CF) and Healthcare Professionals

Cystic fibrosis (CF) is one of the most common inherited conditions in the United Kingdom (UK). There are 10,810 people living with CF in the UK, with median predicted survival now 47 years old. People with CF have multiple medical treatments to do on a daily basis, and the treatment burden is increasing. Adherence to treatment plays an important role in health outcomes and survival in CF.

Online access to their own health care records gives people an increased control over their own health, greater understanding of their conditions and has a potential to improve adherence to care plans and medications. Whilst implementation of electronic records is established in primary care, there has been a much poorer roll out of electronic care records in the secondary care system.

Leeds Teaching Hospitals CF Unit is a regional centre with around 650 adult and paediatric registered patients. Handwritten and typed paper records of patients under the care of the CF unit in Leeds were replaced in 2007 by electronic healthcare records (EHR; EMIS®). Patients view and obtain graphical feedback at each clinic visit including trends in parameters such as lung function, weight and inflammatory markers. In partnership with Egton Medical Information Systems (EMIS) web (EMIS®), a modification allowing secondary care access to patient records has been developed.

In a structured programme of research, the Leeds Adult CF Unit have firstly evaluated the implementation of the EHR in secondary care in terms of service delivery and cost improvement. In the second phase, the investigators sought patient feedback regarding which aspects of their EHR people with CF wish to access, and their priorities for development. This has informed the third phase in which the aim is to explore the impact of patient access to their EHR.

The aims of the trial are 1. To evaluate the feasibility, benefits and acceptability to patients and health care professionals of providing secure access of linked secondary care and patient's Personal Health Records in CF, and 2. To explore technological usability, future functionality and the impact of the shared records on clinical resources, communication and patient and health care professional satisfaction.

Cystic fibrosis (CF) is one of the most common inherited conditions in the United Kingdom (UK). There are 10,810 people living with CF in the UK with median predicted survival now 47 years old. Patients with CF have multiple medical treatments to do on a daily basis, and the treatment burden is increasing. Adherence to treatment plays an important role in health outcomes and survival in CF.

Online access to their own health care records gives patients an increased control over their own health, greater understanding of their conditions and has a potential to improve adherence to care plans and medications. Other potential benefits include improved patient and multi-disciplinary team relationships, individual empowerment, satisfaction, time saving, transparency, shared decision making, positive behavioural change and opportunities for education.

The National Information Board launched an action framework in 2014 for personalised health and care 2020 by providing patients access to their electronic health records and work towards a patient centred healthcare in the UK and push towards a paperless National Health Service (NHS). But even today in 2017, paper still plays a major role throughout the NHS. Whilst implementation of electronic records is established in primary care, there has been a much poorer roll out of electronic care records in the secondary care system.

Leeds Teaching Hospitals CF Unit is a regional centre with around 650 adult and paediatric registered patients. Handwritten and typed paper records of patients under the care of the CF unit in Leeds were replaced in 2007 by electronic healthcare records (EHR; EMIS®). Patients view and obtain graphical feedback at each clinic visit including trends in parameters such as lung function, weight and inflammatory markers.

In partnership with Egton Medical Information Systems (EMIS) web (EMIS®), a modification allowing secondary care access to patient records has been developed. New Functionality in the Leeds CF EHR has the potential of delivering seamless data flow and feedback between patients and health care professionals. These new functionalities include full patient access to their personalised secondary care record as well as the ability to share a personalised patient generated record. Access to the secondary care record can be modified to include different views including current problems, current medication, test requests, letters, consultations, allergies and immunisations.

In a structured programme of research, the Leeds Adult CF Unit have firstly evaluated the implementation of the EHR in secondary care in terms of service delivery and cost improvement. In the second phase, the team sought patient feedback regarding which aspects of their EHR people with CF wish to access, and their priorities for development. This has informed the third phase in which the aim is to explore the impact of patient access to their EHR.

The aims of the trial are 1. To evaluate the feasibility, benefits and acceptability to patients and health care professionals of providing secure access of linked secondary care and patient's Personal Health Records in CF, and 2. To explore technological usability, future functionality and the impact of the shared records on clinical resources, communication and patient and health care professional satisfaction.

Eligibility Criteria:
Currently, there are approximately 400 people with cystic fibrosis (CF) attending the Regional Leeds Adult CF Unit, St James' University Hospital, Leeds, UK, and registered on the electronic healthcare record (EHR). Of these 400 patients, 100 people with CF will be recruited.

Inclusion criteria

* Diagnosis of CF (confirmed via genetic testing or sweat chloride tests)
* Aged 17 years and over
* Males and females
* Able to give written informed consent
* Records stored electronically on the EHR system at the Regional Leeds Adult CF Unit

Exclusion criteria

• Taking part in a clinical trial which prohibits patients taking part in other research