Patients need access to comprehensible information and their summary care records

This letter is in response to ‘Health literacy, medication adherence and thriving healthcare systems: connecting the dots’.

This is an excellent, thought-provoking article that reinforces the need to discuss further the various components of patient education and information, particularly in relation to medication adherence.

You ask: what if the patient’s role extended beyond ‘collecting’ those pills to taking the initiative and asking their physician for clarification or simplified explanations? Well, the answer is obvious: perfect healthcare and more manageable health economics.

Perhaps there is another starting point, and a very basic one, which can also be formulated as a question: do we (all stakeholders in health and social care) really provide information to patients (and their carers/proxies) when medicines are prescribed? I would answer no, because while many primary and secondary-care physicians try very hard to explain why they are making a treatment decision, and would often be more than happy to share the decision-making process with their patients, the reality is that these efforts fail to achieve the desired understanding, awareness and self-care that will result in good adherence and overall good self-management of medical conditions.

Patients, for many different reasons that are often irrelevant of age, education and socio-economic factors, cannot absorb the verbal information given to them in the key care settings (general practice and hospitals). And, alas, there is nothing given to them in writing: nothing tangible, palpable, that they could take home to peruse, refer to, check, or show to a friend or relative, let alone their community pharmacist. Patients need something concrete they own, keep safely, and refer to as many times as they need. The prescription refill form (FP10) is a cold, transactional listing and is of very little use in terms of health literacy.

Of course, there are, in the UK, some initiatives to ‘extend the role of the patient’, which have often been co-designed and co-produced by patients and professionals, such as My Medication Passport, Me and My Medicines, ThinkSAFE, and there are no doubt others that I am not aware of. But these brave efforts are still largely confined to relatively small cohorts of early adopters.

And yet, in 2015, the NHS in England introduced the summary care record with additional information (SCRAI) to record the diagnosis for each prescribed medicine, something that pharmacists, whether in the community or in secondary care, had been campaigning for for years. The SCRAI is available across 98% of the country on all general practice electronic health record systems at no cost. Wonderful! Yes, except that:

• Patients are required to formally request an activation of their SCRAI — not easy when you do not even know what it is in the first place because no information campaign has taken place;
• Patients cannot see/access the SCRAI even when they have signed the request form.

Back to the situation, as you so aptly remind us, where patients can be blamed (or not) for non-adherence and physicians for poor communication (or not), and where we see ‘human’ failure, the issue is, in fact, that of processes and systems.

Why can’t patients be expected to handle a comprehensive, educative, personalised full medication list in the same way they are expected to keep birth certificates, property/car insurance documents, identity passports and many others? Oh why, oh why?

Fran Husson

Lay member, polypharmacy steering group, Royal Pharmaceutical Society