Ownership of the Electronic Health Record: a Tug of War?

In some countries such as the US, the medical practitioner still has ownership of the paper medical record, but this does not automatically mean that this will also apply to the electronic version of the same record. Clinical databases have been around for quite a long time, but for a variety of reasons take up has been slow. The reluctance of clinicians to adopt IT systems has been called ‘the wave that never breaks’. Clinicians may yet live to regret their lack of ownership of EMR developments, because it is clear that the control of the Electronic Health Record is being taken out of their hands.

In 2009, the federal government passed into law the American
Recovery and Reinvestment Act incorporating the Health
Information Technology (HIT) for Economic and Clinical Health Act. This provided $19 billion in incentives to hospitals and physicians who demonstrate “meaningful use” of electronic medical records (EMRs). As of January 2014, the use of an ‘EMR’ or electronic medical record system in the US has become mandatory under Federal law. In fact, the new regulations go further than that, providing incentives to introduce ‘electronic health records’ (EHRs) – allowing the sharing of the whole medical record between different providers. This HIE or Health Information Exchange is creating anxiety among patient groups who see this as a violation of their ownership rights and a risk to privacy. In addition, the new EHR is supposed to collect quality data and ‘provide decision support’. To help drive this change the Federal government has set a timetable of progressive cuts in Medicare funding if compliant systems are not introduced. Whilst many US practitioners are complaining about the over-burdensome and intrusive requirements of the new Act, it is interesting to speculate about why the US government is now so interested in enforcing this development. The clinician now finds that their every act is under the microscope, and their remuneration will depend on how well they code and complete the EHR. A recent study in Am J Emergency Medicine where they showed that 43% of the time in a 10 hour shift was spent entering data into the EMR, 12% in looking up results, and only 28% in direct patient care. That’s quite a shocking statistic.

In England, the direction of travel is similar. A recent Health and Social Care Act gave the government the rights to share millions of primary care records (Care.data) with third party buyers such as pharma and insurance companies without having to obtain consent. This has – not surprisingly – caused a great deal of controversy. Although no names were to be included in the dataset, the post-code and date of birth details provided enough information to match data with readily available election database systems and identify the patient. The protests have led to a 6 month postponement in the roll out of the ‘sell-off’. Very few would argue against the legitimate ‘non-consensual’ use of non-identifiable data but this seems to have been handled badly by the NHS without due consultation with patient groups. On the other hand, the NHS ‘HealthSpace’ big plan to give patients more access to their own record – including a summary care record – were axed after initial pilots used such complex registration processes that the take up was extremely low. Those that had taken the time to develop their record had no say when the records were destroyed. Primary care systems are already geared to collect information pertaining to NHS targets, and development of IT systems in hospitals seem to be going in the same direction. Some of these developments may be best for patient care, but others seem to be more about reducing the cost of health care and forcing clinicians to follow government guidelines rather than advocate for the best care for the patient.

However, all is not lost. Patients are another group that is slowly starting to speak up for themselves. Up to now patients have been firmly locked out of their paper or electronic medical record. In the UK, access to copies of the paper record has been restricted to a lengthy and bureaucratic process which can be blocked for reasons that may be difficult to discover. The internet has helped give a voice to patients and enabled them to campaign for more involvement and control over their health care record. From a clinician’s point of view, participation by patients in EHR developments may well have something positive to offer, but many will fear that these changes will cause unforeseen complications to the relationship between the health care professional and the patient. An opt-out option for patients has the potential to disrupt the shift from paper to electronic medical records. And will health professionals be ‘enslaved’ again to their patients by having to answer increasing numbers of queries delivered directly from their patients.

The first step in the ‘patient integration’ of the EHR is to provide the opportunity for the patient to contribute new information to the record. A relatively new term to describe this is ‘Observations of Daily Living’. This is largely uncontroversial, but perhaps surprisingly has not been widely implemented. On this blog I have written about the multi-dimensional nature of outcomes and how clinicians should – if they are able to – take account of the patient’s experiences and level of function. These may be termed ‘PROMs‘ (patient reported outcome measures) and PREMs (patient reported experience measures). Some clinical registries such as DANBIO are already collecting information directly from patients such as disability questionnaires using touchscreen computers in the waiting area. There is no reason why patients can’t enter some of their own data either through workstations, via the ‘web’ or via a smartphone application. And if patients are going to take the time to do this properly, they will want to something in return. Early adopters tend to be more enthusiastic patients who are not always representative of the general body of patients.

Dave_deBronkart-20091229Some patients are campaigning to take things to a whole new level. Dave deBronkart (@ePatientDave) has for some time been campaigning for patient ownership of their own data so that they can participate actively in their own health care. In a popular TED talk he spoke powerfully from experience about how patients can – and should – be participating in their own medical care. For well educated or well connected people with rare conditions, this e-patient approach may well be worthwhile. It is hard to argue that the ultimate ownership of the health record should be in the hands of the patient, although this is going to have to be implemented carefully.

PatientsLikeMeAnother example worth looking at is ‘PatientsLikeMe.com’, founded by James Heywood, inspired by his brother Stephen’s experience of suffering from ALS. He realised that patients needed to know what other patients were experiencing, even though this might not be in the official information given by the health care team. Whether or not you agree with this, there is no doubt that many patients are using the website to record a lot of detail about their experience of their conditions and the drugs used to treat them. Although this is observational information that is not collected in a rigorous fashion it is quite possible that the power of collecting so much data from so many patients may lead to significant ideas for future research and for healthcare changes that have an impact on the patient experience.

So if these are some of the trends at the moment, what will be the shape of the EHR systems of the future? Can the clinician still influence the design of EHR systems to ensure that they suit the needs and working practices of the busy clinician as well as the administrator and the patient. How can we ensure a comprehensive and reliable EHR systems without tying down the busy health professional in digital chains, destroying their precious face-to-face communication with their patient? Do the systems need to be more open ‘patient-side’? How do we go about engaging the public at large with limited education and interest in health care? Will informing patients more about their health care improve public health and drive down costs or will it achieve exactly the opposite? Or are we going to slavishly type in more and more data and accept the dictats of more and more algorithms? follow more and more algorithms as our EHR systems are driven by data collection targets rather than the quality of our care and our ability to communicate effectively with our patients.

 

Reference:

Ferguson T. Online patient-helpers and physicians working together: a new partnership for high quality health care. BMJ 2000;321: 1129-32