Excellent thought-provoking article which reinforces the need to further discuss 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 health care 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 often would 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 which will result in good adherence and overall good self management of medical conditions.
Patients, for many different reasons which 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/hospitals]. And, alas, there is NEVER anything given to them in writing, anything tangible, palpable they could take home to peruse, refer to, check, show to a friend/relative [let alone their community pharmacist...]. Something concrete they would OWN, keep safely to be able to refer to it as many times as needed. The prescription refill form [FP10] is a cold transactional listing and 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” [as in your above excellent question] which often have been co-designed and co-produced by patients and professionals such as My Medication Passport, Me and My Medicines, ThinkSAFE and no doubt others I am not aware of. But these brave efforts are still largely confined to relatively small cohorts of early adopters.
And yet, the NHS, in England, introduced in 2015 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 GP 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], where we see “human” failure when in fact the issue is that of processes and systems.
Why can’t patients be expected to handle a comprehensive, educative, personalised full medication list the way they are expected to keep birth certificates, property/car insurance documents, identity passports and many other such defining documents?
Oh why, oh why?