Anya de Iongh: Patients need to be activated, but so do clinicians and the system

It has been three and half years since The King’s Fund published a report on Patient Activation, and since then patient activation is increasingly on people’s radars.

Patient activation is a model of an individual’s level of knowledge, confidence, and skills for managing their own health and healthcare, with highly activated patients taking responsibility and playing an active role in managing their health. Should we not therefore be welcoming the profile that patient activation has afforded the field of self-management support and person-centred care? Yes and no.  

The strength of patient activation lies in that it is a framework that resonates well with a clinical workforce, and starts the conversation about what it really means to take responsibility for one’s own health. In language that is familiar to clinicians, it begins to unpick the “behaviour” that the system glibly asks of patients, and gives consideration to individual’s capability, opportunity, and motivation. Using clinical language is important to generate engagement, but not at the expense of the integrity of person-centred approaches.   

As a measurement tool, the Patient Activation Measure (a questionnaire known as PAM, developed by Insignia Health), has gifted us quantifiable data about the impact of self-management support on resource utilization—the seemingly holy grail to secure much needed investment in these approaches. The association between patient activation levels and service use was recently explored in a Health Foundation webinar and published paper. [1]

The translation of the model to a measurement tool (PAM) lends itself to patient stratification, and has provided an opening to consider stratification along more than purely clinical metrics. Patient’s behaviour can trump healthcare input, biology, and environmental factors as self-care and self-management have been shown to have up to 50% of the influence on an individual’s health and wellbeing. [2]

And here lies the challenge that makes my approach to patient activation so mixed. There is a thin line between stratification and tailoring of services and rationalization of care.

I know that stratification is essential as part of tailoring services and ensuring we support those with the greatest need, and that some degree of rationalization is sometimes necessary. However, I feel deeply uncomfortable about relying on a measure of an individual’s level of activation to determine what services they may or may not access.

The personalized care and support planning Commissioning for Quality and Innovation (CQUIN) goal (2017/19) specifies two measures to identify a cohort of patients who could benefit from this approach: the PAM or an alternative using two questions from the existing GP Patient Survey (GPPS). The CQUIN specification uses the phrase “the relevant population to be prioritized…” Prioritization is essential, but it risks creating an assumption that a higher level of activation correlates to zero need.

Along the same lines of rationalization, I have heard of loosely suggested (and thankfully then dismissed) ideas that people with low activation be excluded from pilots to ensure an intervention has the best chance of succeeding without non-compliant or “difficult” patients. I’ve even heard that these less activated patients who don’t self-manage well, have not earned the right to contribute to service improvement discussions.

The model of activation is still valuable, but as a measurement tool, it places the deficit solely with the patient. The much less discussed clinician activation measure (CS-PAM) needs to be more widely used, as does an additional system-level measure, to get the full picture. I am often reminded of Lynne Craven, patient leader and self-management expert, speaking at the NHS England Future of Health conference in 2014, and asking Simon Stevens directly for an activated clinician and NHS, as she was already an activated patient.

There are some broader ethical considerations to patient activation, explored in a recent paper by Gilbert et al (2017), such as the risk of reduced autonomy, which puts patient activation in friction with person-centred care. It can simultaneously raise the profile of person-centred approaches and create a system of “pseudo-person-centredness” where “doing a PAM” is seen as ticking the person-centred box, and forms a useful Trojan horse for clinical agendas.

While we are doing so much to engage and support clinicians with this agenda, it is ironic that it is necessary to have a series of questions to identify behaviours that good clinicians picks up with gut instinct and from conversation. This risks undermining the very skills that we are trying to foster.

The benefits of patient activation, as a component of person-centred care, start with the individual but are important for systems and societies too. It is appropriate to consider and therefore measure it. We’ve started the conversation about patient activation, now we all have responsibility to continue it in a way that is person-centred and in the best interests of the whole population, no matter what their level of activation.

Anya de Iongh, patient editor, The BMJ. Twitter: @BMJPatientEd

Competing interests: Full details here.

References:

1. Barker, Steventon & Deeny (2017) RCP Clinical Medicine Journal 2017 Vol 17, No 3: s15
2. Diagram from http://www.atbsunderland.org.uk/wp-content/uploads/2017/11/Self-Care-1.jpg source: Canadian Institute of Advanced Research (2012) from www.nign.org.uk

  • Naomi Unwin

    Here here Anya!