Who is allowed to read and write?

What makes us human? In 2015 Jeremy Vine asked this question to a selection of leading British thinkers and writers. The answers were as diverse as the people he interviewed. While you might have your own views about the complexity of being human I would suggest that being able to articulate thoughts and communicate them to others might be one of the characteristics that distinguishes us from other life forms. And if we think more about the achievements of human culture then being able to communicate thoughts in writing and reading other people’s thoughts is one of the unique abilities that humanity has acquired during its evolution: Young humans spend extensive time to learn how to read and write. They write on paper, they read books and they do the same on computers. They become adults. They read and write most days: they e-mail their telephone company, file online forms to the tax office and or write romantic notes to their partner. Then they get older and become unwell and enter large modern building full of the most state-of-the-art technology. But here, in hospitals, none of them are allowed to read or write. They are being asked questions by someone who is often younger and in a rush. That person usually speaks a different language called jargon and try their best to translate their jargon to normal language.1 Patients are not allowed to write their own records and access to read the records is cumbersome. And if this is how we structure communication in our clinical practice then why are we surprised about the hierarchical relationship between patients and healthcare professionals and the high rate of error due to miscommunication? There might be good reasons for the way we document in healthcare: historically only the educated few like doctors were able to read and write and therefore the way to record patient histories had to be by those who were educated to do so. Additionally professions have always defined themselves by their own professional language and jargon that allows their members to describe matters precisely and at the same time create a sense of identity. Things have however changed in the last 100 years and a large proportion of our patients is able to read and write and might be perfectly capable to document their own information (and subsequently read all information that relates to them). The paper from Renggli et al in this issue of Acute Medicine explores the feasibility of documentation by patients on admission to hospital in Switzerland by using a web-based platform: at least half of the patients who were admitted with an emergency to hospital could document important parts their own medical history. The study demonstrated that documentation by patients added additional new information over and beyond of that collected by doctors and improved completeness of records, especially for the increasingly important social history. The paper has three important implications: Good information needs time: Patients can add more information if given the questions and their own time – rushing through an unprepared face-to-face consultation is unlikely to bring out the most relevant information in a reliable fashion. Sharing with patients might improve work-efficiency. Up to 25% of the time of doctors and nurses working in hospitals is taken up by documentation2,3: at a time when so many employed in healthcare are overworked and burnt out it would be reckless not to consider changes in information flow through the lens of work-load and efficiency. Quality care needs joint ownership with patients: Patients participation in the co-design and delivery of new services and shared decision of patients and clinicians in making of complex decision has been challenging to say the least. Co-ownership of clinical records is potentially a key strategic lever to achieve better decisions and services. Patient organisations and policy makers are expecting for patients to access medical records. Personal health records are now compulsory in some countries with roll-out of access for all citizens completed in countries like Estonia since 20084 and Sweden since 2018.5 It is National Health Service (NHS) policy to make a “personalized healthcare” available to everybody by 2020.6 That is now. Despite this there is virtually no evidence for the usage of personal health records in hospital.7,8 There are significant caveats to the current study: Half of the patients approached declined to take part and it is unclear why this was the case. Maybe they did not want to take part in any research. Maybe they felt too unwell to write. And maybe they were unable to read and write. While most people reaching adulthood in European countries have gone to school there is also evidence that up to 7 million adults in England are functionally illiterate and not able to read and write beyond the most basic level9 and relying on friends and family members, signs and symbols to travel through modern life. There is also an increasing body of work about digital exclusion and concerns that those who are unable to navigate the online world are at risk of being left behind by society.10 There are additional questions about ownership: do patients own all data that relates to their care or is documentation by healthcare professionals their intellectual property. There are strong arguments for both perspectives. From a patient safety point of view their would seem to be a strong imperative to come to pragmatic agreements. Research suggests that the majority of serious adverse events was flagged by patients and relatives at a time when they could have been predicted and potentially prevented by clinical teams.11 But safety critical information is often hidden from those who are most affected by it, the patients. The paper by Renggli et all does therefore provide important evidence for the development of a more co-operative and democratic way of providing acute care by using something that is a key part of being human: the ability to read and write.