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Level up – how a new measure might help patients master their disease

Summary of an AbbVie and Kings Fund meeting


It has long been a conundrum of healthcare that while we know as fact that every person’s health and wellbeing is unique, the system has to be cautious and treat everyone nearly the same. This causes resources to be wasted and patients to potentially get poorer outcomes as some get more support than they need, while others don’t get enough.

As a result, tools that help the NHS to confidently deliver person-centred care are keenly sought. NICE now routinely includes patient-centred care in all their guidelines and among the most well validated approaches, the ‘Patient Activation Measure’ (PAM), is being rolled out in pilot sites by NHS England. AbbVie is also using it to tailor our AbbVie Care support programme, and recently cohosted a meeting with the Kings Fund to shed more light on the potential of PAM.

Even people with serious long term conditions only have fleeting moments to talk with healthcare professionals. One of the speakers at the conference who had lived with kidney disease and spent years on dialysis stated that over the course of his illness the time he spent getting advice from a medical professional probably added up to little more than four hours a year – the other 8760 hours a year he was on his own. For most people, we talk to clinicians even less and it is our own resourcefulness and confidence that has a major bearing on speed and quality of recovery or lived experience of an ongoing illness.

Completing a PAM questionnaire gives a strong indication of where an individual is at in terms of the level of support they need. It offers a grading from level 1 where an individual feels overwhelmed and out of control of their health to level 4 where they are the expert in their own illness and can self-manage their own condition. Repeating the survey enables health services to track how confidence is faring over time.

This matters to the NHS because those with higher PAM scores are associated with lower cost per patient and that proper use of medicines (adherence) improves the higher up the scale a patient goes. Identifying who needs help the most via PAM grading enables better targeting of support resources. Speakers at the event suggested some interesting potential strategies for helping patients get increasingly knowledgeable and confident. While the temptation might be to focus intensively on those at level 1, speakers suggested this would only increase the sense of being overwhelmed. This group needs small steps of encouragement. Where the biggest potential for improved outcomes and reduced costs could exist is in prioritising support resources for those in the middle.

Despite these positive benefits there are barriers to the full potential being realised. One of these is that PAM has a PR problem. The very name itself is a form of jargon that can be alienating for patients (who thinks of themselves as ‘activated’?) and using plain English to describe the measure would help it be better understood. There is also some inertia from doctors. NHS England estimate that 85 per cent of medics already believe they doing shared decision making and giving patients the right information which is not reflected in the opinions given by the patients they are engaging with and another speaker quoted surveys that more than two thirds have moderate to low faith in the PAM.

What is clear from the enthusiasm and advice of speakers at the Kings Fund event is that the potential is there as long as PAM measurement isn’t considered as a performance measure but as a means to drive smarter commissioning decisions and social policy to encourage patient self-management and the benefits to all that unlocks. 

To watch the highlights of the event click here

 

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