Patients need to be convinced that electronic personal health records (ePHRs) are safe and will benefit them, a group of leading academics have warned. 

The academics argue that although ePHRs, such as the UK’s HealthSpace, have huge potential patients have not yet been convinced and the business case is still to be established. They say further research is needed. 

Writing in the current issue of the BMJ, the academics say that personal health record systems are becoming increasingly complex, and current views about them in the UK are highly polarised, varying from support for the project to fear over security and confidentiality. 

Dr Claudia Pagliari, a senior lecturer in primary care at University of Edinburgh, and one of the co-authors of the report, told E-Health Insider: "There is a lack of existing research currently available to support and promote the principles of ePHRs. There is some available, but the amount is very limited, and more needs to be undertaken to reassure patients of how the systems will work and remain secure and what the benefits will be if they are used correctly."

She added: "ePHR may improve the quality, safety and efficiency of care and empower patients, but further research is required to demonstrate the benefits and risks. Evidence of the impact of ePHR on clinical, safety, economic and psychosocial outcomes is urgently required."

The researchers, who also include Professors Don Detmer and Peter Singleton, define an ePHR as "an electronic application through which individuals can access, manage and share their health information…in a private, secure and confidential environment."

They note that ePHRs are becoming increasingly complex – in some cases integrated into providers’ information systems "to combine personal record keeping, access to current electronic health records, and a range of information and communication functions."

Examples given include Kaiser Permanente in the US which offers its patients access to HealthConnectOnline, providing details of allergies, immunizations, future appointments, diagnoses, lab results and even the ability to book and manage appointments, order prescription refills and email their doctor or nurse.

Another example cited is the LifeSensor PHR offered by InterComponentWare AG. As reported on E-Health Europe this week LifeSensor is shortly to be offered to the 7m people covered by Germany’s largest health insurance firm.

In England, ePHRs are due to be achieved through the NHS HealthSpace, a secure online personal health organiser available to all patients, intended to provide patients with access to elements of their summary care record, delivered as a sub-set of the planned national NHS Care Records Service.

HealthSpace full potential remains some way off

The authors say while HealthSpace has strong potential it remains some way distant. "Although HealthSpace promises a national solution to electronic personal health records, it will be some time before its full potential is realised."

The report calls for the NHS to balance security against utility and integrating diverse data sources and systems.

"In general, there is a lack of communication in Britain, with virtually no public awareness of how HealthSpace will work. There are some enthusiastic GPs giving patients the right information, but without someone to go through it with there are issues like how do you make sense of this data – if it is not done properly then it could be misinterpreted, cause unnecessary harm or frighten a patient, leading to some quack prescribing the wrong medication," said Dr Pagliari.

In a detailed analysis, the academics indicate some of the key issues which need to be addressed before HealthSpace can be fully rolled out and used by patients across England.

The report warns: "The business case for personal electronic records in the UK has not been well established, and it remains to be seen which optional services patients and local care providers will be prepared to pay for."

The most frequent users of ePHRs are, the researchers suggest, likely to be patients with long term conditions, who have the most need to track their illnesses and treatments, and patients expiring episodic periods of care or treatment that generate new needs for information or communication.

Priorities for ePHR

Bearing in mind these requirements, the report lists five areas which need to be considered in order to create a suitable ePHR for use nationally:

1. Privacy and security – anxieties around security and confidentiality should be addressed to satisfy the requirements of all users – particularly patients with mental or sexual health data.

2. Digital divide – attention should be paid to usability and training in order to overcome access disparities resulting from poor technical skills – for example, among elderly people.

3. Choice of model – patients should be able to decide if the risk based on the model of ePHR offered to them is acceptable, creating an imperative for standards to ensure transparency of contributorship and access.

4. Technical considerations – incompatibility between different systems and databases remains a barrier to integrated records. Further work is required to ensure effective management of interactivity between patient and provider records and the balance between live and historical data.

5. People and organisational factors – to realise their potential, ePHRs must be integrated within care processes. This will require efforts to develop policies, conventions, and incentives for using such records as well as changing attitudes and expectations regarding appropriate modes of transaction and the rebalancing of information and status differentials in the doctor-patient relationship.

The researchers also stress the need for GPs to work with patients in ensuring data on a ePHR is fully understood and not misinterpreted in any way.

"Healthcare professionals will need to be sensitive in their use of clinical terms and delay entering threatening diagnoses or test results until after speaking to the patient. Public education on the value of internet hygiene and password secrecy will also encourage more secure and appropriate use of online records."

The BMJ paper continues: "Professionals and patients should be involved in the design, development, implementation and evaluation to generate a sense of ownership and ensure that systems meet users’ needs and are easy to operate, more immediately, measures to increase awareness of the potential value of ePHRs to patients and the NHS are needed if these systems are to be adopted in the UK."

Benefits of ePHRs outweigh the risks

Dr Pagliari told EHI: "The benefits of ePHRs outweigh the risks and there are many successful systems running across the globe. The UK is the first to do so on a national scale, and must ensure that they are adequately understood and used by all involved by greatly increasing awareness."

Dr Gillian Braunold, GP clinical lead at Connecting for Health, said: "I understand there are concerns around issues such as patient confidentiality and security, which is why we have made every effort to ensure the NHS Care Records Service is protected by the highest levels of international security and a range of access controls."

To access their records online, a patient would first need to enter their unique username and password, when they will be prompted to enter a series of digits, the random sequence required changing every time they wanted to log on.

Patients would find these digits by checking their own unique ‘bingo-style’ grid card, already sent to them through the post, the agency in charge of the National Programme for IT added.


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