{"id":41068,"date":"2018-01-09T12:28:54","date_gmt":"2018-01-09T11:28:54","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=41068"},"modified":"2018-01-22T17:30:55","modified_gmt":"2018-01-22T16:30:55","slug":"anya-de-iongh-patients-need-to-be-activated-but-so-do-clinicians-and-the-system","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2018\/01\/09\/anya-de-iongh-patients-need-to-be-activated-but-so-do-clinicians-and-the-system\/","title":{"rendered":"Anya de Iongh: Patients need to be activated, but so do clinicians and the system"},"content":{"rendered":"<p><span style=\"font-weight: 400\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-41070\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2018\/01\/anya-deiongh.jpg\" alt=\"\" width=\"160\" height=\"160\" srcset=\"https:\/\/blogs.bmj.com\/bmj\/files\/2018\/01\/anya-deiongh.jpg 160w, https:\/\/blogs.bmj.com\/bmj\/files\/2018\/01\/anya-deiongh-150x150.jpg 150w\" sizes=\"auto, (max-width: 160px) 100vw, 160px\" \/>It has been three and half years since <a href=\"https:\/\/www.kingsfund.org.uk\/sites\/default\/files\/field\/field_publication_file\/supporting-people-manage-health-patient-activation-may14.pdf\">The King\u2019s Fund published a report on Patient Activation<\/a><\/span><span style=\"font-weight: 400\">, and since then patient activation is increasingly on people\u2019s radars. <\/span><\/p>\n<p><span style=\"font-weight: 400\">Patient activation is a model of an individual\u2019s 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. \u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019s own health. In language that is familiar to clinicians, it begins to unpick the \u201cbehaviour\u201d that the system glibly asks of patients, and gives consideration to individual\u2019s capability, opportunity, and motivation. Using clinical language is important to generate engagement, but not at the expense of the integrity of person-centred approaches. \u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">As a measurement tool, the Patient Activation Measure (a questionnaire known as PAM, developed by <a href=\"http:\/\/www.insigniahealth.com\/products\/pam-survey\">Insignia Health<\/a><\/span><span style=\"font-weight: 400\">), has gifted us quantifiable data about the impact of self-management support on resource utilization\u2014the 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 <a href=\"http:\/\/www.health.org.uk\/webinar-understanding-and-using-patient-activation-measure-nhs\">Health Foundation webinar<\/a><\/span><span style=\"font-weight: 400\"> and published paper<\/span><span style=\"font-weight: 400\">. [1]<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019s 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 <a href=\"http:\/\/www.atbsunderland.org.uk\/wp-content\/uploads\/2017\/11\/Self-Care-1.jpg\">individual\u2019s health and wellbeing<\/a>. [2]<\/span><\/p>\n<p><span style=\"font-weight: 400\">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.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019s level of activation to determine what services they may or may not access.<\/span><\/p>\n<p><span style=\"font-weight: 400\">The personalized care and support planning <\/span><span style=\"font-weight: 400\">Commissioning for Quality and Innovation<\/span><span style=\"font-weight: 400\"> (<\/span><span style=\"font-weight: 400\">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 <a href=\"https:\/\/www.england.nhs.uk\/publication\/cquin-indicator-specification\/\">GP Patient Survey (GPPS)<\/a><\/span><span style=\"font-weight: 400\">. The CQUIN specification uses the phrase &#8220;the relevant population to be prioritized\u2026\u201d Prioritization is essential, but it risks creating an assumption that a higher level of activation correlates to zero need.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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 \u201cdifficult\u201d patients. I\u2019ve even heard that these less activated patients who don\u2019t self-manage well, have not earned the right to contribute to service improvement discussions.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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 (<a href=\"https:\/\/www.england.nhs.uk\/wp-content\/uploads\/2015\/11\/cspam-report.pdf\">CS-PAM<\/a><\/span><span style=\"font-weight: 400\">) 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<\/span><span style=\"font-weight: 400\">, 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.<\/span><\/p>\n<p><span style=\"font-weight: 400\">There are some broader ethical considerations to patient activation, explored in a recent paper by <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/28774956\">Gilbert et al (2017)<\/a><\/span><span style=\"font-weight: 400\">, 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 &#8220;pseudo-person-centredness&#8221; where &#8220;doing a PAM&#8221; is seen as ticking the person-centred box, and forms a useful Trojan horse for clinical agendas.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019ve 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.<\/span><\/p>\n<p><strong>Anya de Iongh<\/strong>, patient editor, <em>The BMJ<\/em>.\u00a0Twitter:\u00a0<a href=\"https:\/\/twitter.com\/bmjpatiented\">@BMJPatientEd<\/a><\/p>\n<p><strong>Competing interests<\/strong>: <a href=\"http:\/\/www.bmj.com\/about-bmj\/advisory-panels\/patient-panel-members\/anya-de-iongh\">Full details here<\/a>.<\/p>\n<p><strong>References:<\/strong><\/p>\n<p><span style=\"font-weight: 400\">1.<\/span><span style=\"font-weight: 400\">\u00a0Barker, Steventon &amp; Deeny (2017)\u00a0<\/span><span style=\"font-weight: 400\">RCP Clinical Medicine Journal 2017 Vol 17, No 3: s15<br \/>\n2.\u00a0Diagram from <a href=\"http:\/\/www.atbsunderland.org.uk\/wp-content\/uploads\/2017\/11\/Self-Care-1.jpg\">http:\/\/www.atbsunderland.org.uk\/wp-content\/uploads\/2017\/11\/Self-Care-1.jpg<\/a> source: Canadian Institute of Advanced Research (2012) from <a href=\"http:\/\/www.nign.org.uk\">www.nign.org.uk<\/a> <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>It has been three and half years since The King\u2019s Fund published a report on Patient Activation, and since then patient activation is increasingly on people\u2019s radars. Patient activation is [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2018\/01\/09\/anya-de-iongh-patients-need-to-be-activated-but-so-do-clinicians-and-the-system\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":41103,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[18892,5749],"tags":[],"class_list":["post-41068","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-anya-de-iongh","category-patient-perspectives"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Anya de Iongh: Patients need to be activated, but so do clinicians and the system - The BMJ<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/bmj\/2018\/01\/09\/anya-de-iongh-patients-need-to-be-activated-but-so-do-clinicians-and-the-system\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Anya de Iongh: Patients need to be activated, but so do clinicians and the system - The BMJ\" \/>\n<meta property=\"og:description\" content=\"It has been three and half years since The King\u2019s Fund published a report on Patient Activation, and since then patient activation is increasingly on people\u2019s radars. 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