According to the Department of Health, it is the ambition of the health and care system to become paper-free and provide citizens with their full health and care digital records by 2020. You can read more about this here: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/384650/NIB_Report.pdf.
The PHR (personal healthcare record) concept was rolled out in the Department of Health’s 2012 Information Strategy for England. The rationale is that patients should be enabled to have greater involvement in managing and making decisions about their health.
This is a laudable goal, aimed at making medical services more modern, convenient and responsive. If done well, it has the potential to improve access to services, efficiency and to foster real trust and confidence in important relationships between patients and healthcare professionals.
Information management is important in healthcare. Access to and engagement with accurate, detailed and timely information allows patients to understand their own health better, to choose healthier lifestyles and to choose (and better engage with) treatment options that are right for them. The PHR vision for the future is one where patients are partners in their healthcare, actively involved in managing their own health data, which means not just being able to passively read it online but also able to manage who else has access to it (whether in part or in whole) and also eventually, to be able to contribute meaningfully to it.
A key aspect of the plan is that there will be a single set of records, to which all parties interested in the care of an individual can have access and contribute (to the extent allowed by the manager of the records, who will usually be the patient, or the patient’s delegated representative), and which can be accessed online from any location, at any time, whenever they are needed.
The Patient Information Forum information leaflet ‘Guide To Health Records Access’ issued in 2012 (available online www.pifonline.org.uk) suggests a scenario where in the future a patient with a PHR will be able to do all the following online: set up personal devices such as weighing scales, pedometer etc to transfer data automatically to her PHR; voluntarily add her own data such as dietary notes or photographs of skin conditions; to manage who has access to what info within her PHR; to communicate securely with health care providers; to manage appointments and prescriptions and so on all within the same system.
This is still a way off, but some substantial progress has been made, at least in primary care. Of the roughly 8,000 or so GP practices in England, in 2012 only 100 were offering any online services at all. By the 31st of March this year, all GP practices across England should be offering online GP services to patients who request it. This is required by the General Medical Services (GMS) and Personal Medical Services (PMS) regulations for 2015/16. The option to book appointments online or order repeat prescriptions should have been available in all GP practices since the 31st of March 2015. The GMS/PMS regulations for 2014-15 already required practices to offer patients access to summary information (immunisations, allergies and medication) in their records last year, this year patients will be able to see test results and illnesses too (but NB that all this information will be available online in coded form, this is not yet access to complete GP records online). To get this access you will just need to ask for it – and you may need to provide photo ID at your practice to be registered for the system.
There is not yet any requirement to provide patients with access online to their entire detailed records (although some practices are ahead of the game and already offering this). A patient of a GP practice not yet voluntarily offering access online to full medical records will have to apply in the traditional way – via a ‘subject access request’ under the terms of the Data Protection Act 1998 which could incur a charge up to a maximum of £50 for a printed copy of the record. Further information about how to submit a subject access request can be found on the NHS Choices website http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx.
Relevance to medico-legal practice:
Issues about online security and confidentially of sensitive personal health data are still at the forefront of many patient concerns about PHRs. Ensuring equal access for all, even those without internet access at home, or without the skills to use the internet, is also an important problem that will require perhaps extra support for those patients. There are potential clinical negligence liability issues too: the lines of responsibility for the records (both in terms of content and review) are not yet clear or standardised – who will have responsibility to join the dots of the content of complicated online records generated outside a particular care context? For example, where a patient is contributing information from multiple health monitoring devices and these provide data that suggest a problem and should trigger a response – whose responsibility is it to review that data and respond? What if data are electronically ‘misfiled’ by the patient or healthcare professional? How will the accuracy of the patient sourced data (for example the right calibration of the monitoring system being used, or the right method of data collection) be guaranteed?
In litigation we often have to make arguments about disputed facts where the patient disagrees with the content of her records, and of course the extent to which a patient has the right to review and amend or add to her records will necessarily affect the character of these arguments.
A greater reliance on electronic records by the healthcare system will mean that lawyers will have to become familiar with the use and management of these systems: unfortunately there are already multiple systems in use depending on the software supplier the GP practice is working with (the most used ones are EMIS, INPS, Microtest and TPP). We usually rely on our GP experts to explain the intricacies of the electronic record system (what should be seen on screen, who has access to tests results, what does an entry mean about who has seen or accessed it etc) but with the advent of greater reliance on electronic records there is an increasingly strong argument for educating ourselves directly in the workings of the most common systems.
One aspect of the PHR plan will surely be welcomed universally by litigators – the availability of complete health records, in one location, immediately available to be downloaded or copied, will save the enormous amount of time, correspondence and satellite litigation that is currently employed in tracking down and obtaining full sets from the often many and various different providers involved in a Claimant’s care. It would be naïve to expect these problems to disappear in 2020, but some substantial improvement can be expected as it is anticipated some effort will be expended in collating patient records from various providers in the run up to the PHR live launch and if the system is working as envisaged by then, patients will be able to facilitate collation of full records themselves thereafter.