ESOF 2016: Debating patient benefits from sharing healthcare records

Recent advances in mobile technologies, apps and wearable devices are enabling many new opportunities for revolutionising healthcare that could greatly reduce the delays, costs and errors associated with current systems. For example, automated reporting of individuals’ health indications could dramatically improve treatment times and safety. The integration of patient systems would also allow the development of personalised treatment regimens for better patient outcome and reduced side effects. In the UK, all of these advantages could also reduce the current economic burden for the NHS.

In order to exploit these new developments, the UK’s healthcare systems would need to become fully digitalised, with complete electronic health records (EHRs) for every single patient. Currently, the UK’s healthcare is at best semi-digitalised, with some regions having full EHRs that record patient’s interactions across different services. Other regions are still relying largely on paper-based records, or fragmented EHRs that are not synced across different healthcare providers’ databases. Moving to a fully digitalised national system requires ongoing investment in technologies and training, but a greater challenge to overcome may be negative public perceptions about sharing personal data with scientists, and particularly disclosing medical records.

This important subject was discussed at the recent EuroScience Open Forum (ESOF) 2016 in Manchester, where we attended a variety of talks about the potential of EHRs for assisting clinicians as well as providing better healthcare access to patients.

Carl Johan Sundberg, Professor of Molecular & Applied Exercise Physiology, Department of Physiology & Pharmacology at Karolinska Institutet, Stockholm, and Board Member, EuroScience, presented ‘Should we trust the EDoctor?’. One of Carl’s main research areas focuses on computerised patient history-taking, where the patient interacts with a tablet or a computer to provide details of symptoms and other history information. Prof Sundberg’s discussion focused on computational models for patients that require data entry prior to a consultation, in order to help clinicians make more accurate patient diagnoses. His software application contains a range of 30,000 possible questions that are determined during the history-taking process by the patient’s previous answers. The discussion also covered the proliferation of unregulated healthcare apps and the need for guidance for patients around which apps are reliable, in a similar way to which drugs are regulated. This presentation sparked further discussion about confidentiality of data. Within the audience it seemed that so-called digital natives, who had grown up with mobile technology, were generally less worried about the implications of allowing third party access to their data.

Professor John New, Chief Clinical Officer at NWEH, also partook in the discussion and was asked to offer his insights on the future of EHealth in the UK. He explained that NWEH’s technology can present data from EHRs that could be fed into models such as Prof Sundberg’s, to lower the time taken for data entry and increase the accuracy of information records.

Professor New said, “This meeting highlighted the enthusiasm that people have for adopting EHealth, but also the need for reassurance of the quality, consistency and security of what they are being offered. This is a very exciting time for EHealth.”

Elsewhere at the conference, the ‘Trust me, I am data’ session brought together researchers from the Farr Institute’s Health e-Research Centre (HeRC, University of Manchester), Merck Sharp Dohme and UCL, who debated a number of important questions around this topic.

The panel discussed EHRs and the need to maintain public trust, while improving understanding between healthcare practitioners and users about the benefits of allowing data to be used for research.  Professor Iain Buchan, Director of HeRC, discussed the richness of healthcare data that is becoming available from consumer devices. Professor Tjeerd van Staa discussed how real world evidence has been beneficial in delivering better clinical trials. The panel also discussed EHRs and the need to maintain public trust, while improving understanding between healthcare practitioners and users about the benefits of allowing data to be used for research.

Public perceptions are unlikely to change overnight, but as we see more collaboration between technology providers, healthcare communities, drug developers and academic organisations, we can expect greater benefits for public healthcare, along with safer processes and less fear about handling of patient data.