Risk and the neglected role of patients

One of the most underused resources we have in the management of risk in healthcare are the patients and carers who obligingly commit to the medicines we produce. We then do our best to keep them uninformed.

We have just launched a new public information service called Keep Me Informed | Medicines in the UK (link above). We are creating a channel directly to the patients, carers and healthcarers to provide information about medicines, new and old. Sourced from organisations like the EMA, MHRA, NICE, NHS and peer reviewed journals, we aim to help create a less asymmetric environment when it comes to the dialogue we have with our healthcarers.

We are also addressing the issue of informing consumers of medicines when there is something important they should know such as changes to the patient leaflets (and labels) that my affect them. Typically this relates to side effects and typically the safety systems we have fail to address the effective communication of such warnings.

Our goal is to help recalibrate the role the patient has in the management of their conditions, in association with their healthcarers. In keeping with many other, non medical, initiatives we are using available technologies and information delivery channels to shine a light on an area that is still, to many people, shrouded in mystery. Medicines information. A combination of pre-internet, mid 20th century rules, questionable commercialisation and paternalism has meant that patients and their carers are largely excluded from getting the information that would help them manage their healthcare risk.

Change - the inevitable consequence of a technological and societal overhaul. Our millennial healthcare professionals have 'grown up' with an understanding of the capabilities of technology. Perhaps the idea that patients would have the audacity to research their own conditions (and treatments) is more of an anathema to these folk.

There is understandable confusion amongst patients due, in no small part, to the dissonance created by the message of 'take more responsibility for your health' against the attitudes of some healthcarers and the passive way we deliver information, particularly that about medicines. The pharmaceutical industry hesitantly flits around the prohibition of telling us about their treatments whilst healthcare providers are reluctant due to fear of unconstrained financial impact.

Patients deserve better. They have demonstrated, unequivocally, that they are interested in healthcare and rather than criticise them we must do more to democratise medicine by providing the information tools that support their decisions.

We have healthcare systems that are at full capacity or inhibit wide scale public benefit through cost. These systems fail to take the steps that provide patients with the managed autonomy they expect and that will surely reduce some of the burden of coping with the consequences.

Complementing healthcare provision with better patient involvement will improve outcomes through management of risk. For example:

• Risks of the effects of disease – consequences of their conditions are often complex and can be overwhelming
• Risks on the quality of life - many patients 'tolerate' the effects of treatment or stop it all together
• Risks of the symptoms of disease – the single most important factors to many patients
• Risks of the treatment of disease – that a treatment can cause side effects that are manageable
• Risks of co-morbidity – the complexities of managing independent or linked pathologies
• Risks of polypharmacy – avoiding or detecting problems in complex patients
• Risks of interactions – a problem of unknown magnitude
• Risks of contraindications – ditto
• Risks of side effects – very poorly handled – legal obligations of a pack leaflet or label serve little functional purpose. The side effects one gets are the ones to worry about!
• Risks of non-adherence – as a result of the above causes unknown numbers of false signals, costly and often a result of poor information, communication or understanding.

The manifestation of side effects is, among other things, a major cause of non-adherence. Patients with chronic conditions are faced with an incomprehensible palette of possible side effects and the guidance to identify problems as being drug related (and what to do about them) is sorely lacking.

Keep Me Informed will, in future, implement a symptom driven approach to identifying side effects that matches the experience of patients and then help them and their healthcarers isolate the probable, causative factor. We will also employ EHR data analytics to predict optimal treatments and likely consequential morbidities. More Flight Management System than Black Box.

By focusing on patients we can strive to work with healthcarers. Moreover we see the patient being the controller of their health information. As interoperability seems elusive, I'll take control of my own records thank you! Then I can decide who has access.

Over and above the effects of personalised care we can foresee the value of an outcome based, risk reductive approach where we gauge success by patient satisfaction, outcomes, and reduced suffering and confusion caused by a system that is barely coping.

This is serious medicine and, dare I say, beyond the capabilities of wellness trackers (no offence). We need to avoid being set adrift by the healthcare system, often without a paddle, having to cope with rising costs, limited capacity, inappropriate treatment and the 'make-do' consequence of a system with infinite demand.

Please try Keep Me Informed | Medicines and help us progress down this care pathway.