{"id":37071,"date":"2016-07-19T11:23:28","date_gmt":"2016-07-19T10:23:28","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=37071"},"modified":"2016-07-19T11:23:28","modified_gmt":"2016-07-19T10:23:28","slug":"rosamund-snow-what-makes-a-real-patient","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2016\/07\/19\/rosamund-snow-what-makes-a-real-patient\/","title":{"rendered":"Rosamund Snow: What makes a real patient?"},"content":{"rendered":"<p><a href=\"https:\/\/blogs.bmj.com\/bmj\/2016\/01\/18\/rosamund-snow-a-year-of-patients-thoughts\/rosamund_snow\/\" rel=\"attachment wp-att-36024\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-36024\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2016\/01\/rosamund_snow-150x150.jpg\" alt=\"rosamund_snow\" width=\"150\" height=\"150\" \/><\/a>A few years ago I applied for a grant to study my own long term condition. I started out as Ms Snow, ashamed of saying the name of my disease, and ended up Dr Snow, the type 1 diabetic, knowing a lot more about research and academia than I ever thought I would. I realised that patients can see things in research that clinicians can\u2019t because <a href=\"http:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1464-5491.2011.03447.x\/full\">we think to look in new places<\/a>, and <a href=\"http:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/dme.12401\/full\">we spot discrepancies<\/a> that doctors take for granted. I became particularly interested in <a href=\"http:\/\/bmjopen.bmj.com\/content\/3\/11\/e003583.full\">power relations<\/a>, and then in the things that <a href=\"http:\/\/bmcmedicine.biomedcentral.com\/articles\/10.1186\/s12916-015-0437-x\">stop patients having a say in what gets researched in the first place<\/a>.<!--more--><\/p>\n<p>I have taken part as a patient in many \u201cpatient and public involvement\u201d (PPI) groups. As I changed who I was (from Ms to Dr), I noticed an odd phenomenon. People stopped being sure whether I was a \u201creal\u201d patient.<\/p>\n<p>Until recently, according to the National Institute of Health Research (NIHR), having a doctorate automatically banned me from being part of their PPI reference groups. That was particularly ironic for me, because it was the NIHR that funded me to become a service-user researcher in the first place. The NIHR\u2019s Evaluation, Trials and Studies Coordinating Centre (NETSCC) has now reconsidered this policy for future recruitment rounds, but the policy has not yet been changed NIHR-wide.\u00a0It is still a very familiar concern.<\/p>\n<p>Is it a legitimate concern? Why else might organisations like the NIHR want the pre-doctorate me, but not the post-doctorate me?<\/p>\n<p><span style=\"text-decoration: underline\"><strong>Theory 1: Real patients aren\u2019t supposed to have knowledge <\/strong><\/span><\/p>\n<p>As Ms Snow, I didn\u2019t know much about academia. I knew about living with type 1 diabetes, and had already spotted that much of the research in diabetes is based on flawed assumptions, but I didn\u2019t really know how to argue that point. As Dr Snow, I know what a p value is. I know who Foucault and Bourdieu were. I have dug into those flawed assumptions and shaky evidence base for some of the statements made about diabetes, and I can confidently argue those points with anyone. I don\u2019t give up as easily as I did when I was Ms Snow; I have the same passion, but I get less frustrated, because now I have the tools to fight my corner. This is in fact the complete opposite from the assumptions the NIHR is making about people like me. Meanwhile, in some organisations, PPI groups are forced to change personnel every couple of years. It\u2019s hard not to be cynical about these policies. Is it because if we know stuff, we can argue back?<\/p>\n<p><strong><span style=\"text-decoration: underline\">Theory 2: Real patients don\u2019t have the ability to acquire knowledge<\/span><\/strong><\/p>\n<p>From throw away comments by researchers and clinicians, I suspect real patients are supposed to be a bit gormless. I\u2019ve sat on a lot of PPI groups where healthy researchers provide the structure of the meeting and offer round the biscuits, and the patients provide the naivety. These are the groups where we end up \u201ccommenting on lay summaries\u201d rather than having any useful input on research questions and outcomes. We\u2019re allowed to remind the researchers why they went into the job in the first place, but we\u2019re not supposed to be able to comment on methodology, even if the methodology is flawed because the researchers aren\u2019t aware of their own biases.<\/p>\n<p><span style=\"text-decoration: underline\"><strong>Theory 3: Real patients need protecting from academics<\/strong><\/span><\/p>\n<p>At first glance this seems the least unpleasant of the theories: a fear that academics saying \u201cwe\u2019re all patients really\u201d would drown out the non-academic patients. I find it nearly as creepy as the other theories, because it gives an uncomfortable insight into the lack of thinking behind their PPI strategy. When people want me to be a patient on a PPI group I always ask \u201cwhy are you asking me?\u201d If you want &#8220;a patient,&#8221; I may not be the best person, because it will depend on what you are looking at. I can\u2019t comment on, for example, what it\u2019s like to use palliative care services or what it\u2019s like to be a patient who can\u2019t read or write. If that\u2019s what you want, go and find the right patient. If I have specific experiences that would give you an insight, I\u2019m happy to help. But if you already have an academic with equally relevant lived experience, <em>and she\u2019s willing to use that experience<\/em>, is it really out of the question to ask her? Note the emphasis \u2013 that researcher has to be willing. Having a disease can be considered a conflict of interest or a source of bias by those who don\u2019t really understand subjectivity and bias. Those who start off as academics also have to make the uncomfortable move from identifying as \u201cDr X, the ordinary researcher\u201d to \u201cDr X, who is going to use his life experience (even his vulnerabilities) to make this research more relevant and effective.\u201d Very few traditional academics I\u2019ve met are willing to do this; but service-user researchers do it all the time.<\/p>\n<p>Perhaps I must just be content with the fact that as far as some academics are concerned, the moment I got through my final exams, I stopped being \u201creal.\u201d<\/p>\n<p>I wish someone would tell my pancreas, mind you. I still don\u2019t seem to be cured.<\/p>\n<p><em><strong>Rosamund Snow<\/strong>, patient editor, The BMJ<\/em>. Twitter:\u00a0<a href=\"https:\/\/twitter.com\/bmjpatiented\">@BMJPatientEd<\/a><\/p>\n<p><strong>Competing interests:<\/strong> See <a href=\"http:\/\/www.bmj.com\/about-bmj\/editorial-staff\/rosamund-snow\">Rosamund&#8217;s editorial staff page<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A few years ago I applied for a grant to study my own long term condition. I started out as Ms Snow, ashamed of saying the name of my disease, [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2016\/07\/19\/rosamund-snow-what-makes-a-real-patient\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[116],"tags":[],"class_list":["post-37071","post","type-post","status-publish","format-standard","hentry","category-editors-at-large"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rosamund Snow: What makes a real patient? - 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\/2016\/07\/19\/rosamund-snow-what-makes-a-real-patient\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rosamund Snow: What makes a real patient? - The BMJ\" \/>\n<meta property=\"og:description\" content=\"A few years ago I applied for a grant to study my own long term condition. 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