By Dr Ana Luisa Neves, Research Fellow at the Imperial NIHR Patient Safety Translational Research Centre.
Over the last decade, incentives to adopt electronic health records have spread worldwide. Electronic health records offer many advantages, including an easier access to centralised health information by healthcare providers, patients and researchers, ultimately leading to a better coordination of patient care, greater efficiency, and better health outcomes.
The drive towards digital data
Significant progress towards the development and adoption of electronic health records has now been seen in a number of countries including Australia, Estonia, Denmark, and the United Kingdom. Initially, care organisations had exclusive access to the data, which was primarily shared with other healthcare professionals for a person’s care. But now, electronic health records have also emerged as a promising way to boost patients’ access to coordinated medical information.
Following the trend towards digital data, in February 2016, 97% of GP surgeries in England allowed patients to access their medical records online. Although these numbers seem promising, both a patient’s ability and willingness to access this information are substantially affected by several socio-demographic factors including age, ethnicity, and education. But while access rates continue to increase, and we better understand the factors that enhance this use, we need to better understand, objectively, the impact of providing patients with access to their records.
Expectation versus reality
Giving patients access to their health records has been linked with a range of benefits that fall under four major categories of healthcare quality: patient-centredness, effectiveness, efficiency, and safety. Being patient-centred means addressing an individual patient’s preferences, needs and values, while effectiveness concerns improvements we can measure. Efficiency in healthcare comes with reductions in the waste of vital resources such as staff and funds. Finally, ensuring patient safety is also a key aspect of high-quality healthcare, and one important way to demonstrate this is through the prevention of errors that could potentially lead to harm.
Although the potential benefits of making data available to patients have been framed within these four categories, so far the positive impacts haven’t matched up with those that were predicted. Importantly, studies evaluating the impact of such data sharing often neglect two additional aspects of quality in healthcare: timeliness (i.e. the reduction of waiting-times and harmful delays) and equity (i.e. the reduction of avoidable differences care received by different groups of people).
On top of this issue, a number of studies reviewed the impact of these trends in patient data, using published work up to 2013, and failed to demonstrate consistent benefits. This highlights the gaps within and limitations of the evidence published until that date. But in more recent years, debates around patients’ rights and data ownership in the digital era, and a greater focus on improving patient-centredness have generated a drive to develop ways to enhance patients’ access to their data.
Filling in the blanks
The comprehensive body of work published on this subject to date can hopefully provide further clarification on this evidence gap. But there needs to be a way to reliably analyse this mass of data, in order to characterise and evaluate both the benefits and risks of sharing electronic health data with patients. And that’s where our latest study, published in BMJ Open, comes in.
We proposed a reproducible strategy to query the literature that could not only help identify the pros and cons of giving patients access to their records, but also map these results in a framework of healthcare quality measures. With this work, we hope to generate a robust knowledge base to inform policymakers on the importance of developing and rolling out routinely useable, patient-facing portals for electronic health records that can ultimately promote a better and safer healthcare.
Ana Luisa Neves MD PhD is a General Practitioner, and Research Fellow in Clinical Analytics and Patient Safety at the NIHR Imperial Patient Safety Translational Research Centre, Institute of Global Health Innovation.
The full paper, “Impact of sharing electronic health records with patients on the quality and safety of care: a systematic review and narrative synthesis protocol,” is available at BMJOpen.