{"id":46413,"date":"2020-01-09T17:27:35","date_gmt":"2020-01-09T16:27:35","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=46413"},"modified":"2020-01-17T12:34:42","modified_gmt":"2020-01-17T11:34:42","slug":"dawn-p-richards-dont-call-my-experience-a-patient-story","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/01\/09\/dawn-p-richards-dont-call-my-experience-a-patient-story\/","title":{"rendered":"Dawn P Richards: Don&#8217;t call my experience a patient &#8220;story&#8221;"},"content":{"rendered":"<p class=\"standfirst\"><span style=\"font-weight: 400\">The word \u201cstory\u201d can devalue a person\u2019s experience, as if it is not based on evidence, says Dawn P Richards<\/span><\/p>\n<p><!--more--><span style=\"font-weight: 400\"><a href=\"https:\/\/blogs.bmj.com\/bmj\/files\/2018\/02\/DR-Jan16.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-41388\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2018\/02\/DR-Jan16.jpg\" alt=\"\" width=\"136\" height=\"127\" \/><\/a><span style=\"font-weight: 400\">I\u2019ve been thinking a lot lately about the use of the phrase \u201cpatient story.\u201d On the surface, it seems harmless enough\u2014patients are often invited in healthcare and research to share their \u201cstory\u201d or their \u201cjourney.\u201d But, some comments from people I respect in this space have really made me wonder about the word \u201cstory\u201d and its use in this context.\u00a0<\/span><\/span><\/p>\n<p><span style=\"font-weight: 400\">My fellow Canadian patient advocate, Annette McKinnon said \u201c\u2026characterizing patient and caregiver interactions with healthcare as \u2018stories\u2019 is so frustrating. The experiences we describe are based on fact and we communicate them because we want to protect others from having similar encounters.\u201d While story is defined in many ways including: an account of incidents or events; a statement regarding the facts pertinent to a situation in question, or anecdote (especially: <\/span><a href=\"https:\/\/www.merriam-webster.com\/dictionary\/story\"><span style=\"font-weight: 400\">an amusing one<\/span><\/a><span style=\"font-weight: 400\">), it can feel that in healthcare a patient\u2019s story may suggest other meanings such as \u201ca fictional narrative, the intrigue or plot of a narrative or dramatic work; a widely circulated rumour; lie, falsehood\u201d. In healthcare it can feel like the word \u201cstory\u201d devalues a person\u2019s experience, as if it is not based on evidence. Perhaps it is also an attempt by patients to compartmentalize that part of themselves.<\/span><\/p>\n<p><span style=\"font-weight: 400\">When I work with organizations that include patients, I encourage them to move beyond having a patient present to \u201ctell their story.\u201d Patients are more than their stories and <\/span><a href=\"https:\/\/blogs.bmj.com\/bmj\/2018\/02\/14\/dawn-p-richards-the-patient-as-a-person\/\"><span style=\"font-weight: 400\">I\u2019ve written here<\/span><\/a><span style=\"font-weight: 400\"> previously about how I prefer to be seen as an entire person, not just the story of me in the healthcare system. When I\u2019m asked to talk about \u201cMy patient life,\u201d I purposely write it out on my slides as \u201cMy <span style=\"text-decoration: line-through\">patient<\/span> life\u201d because being a patient is my life. My \u201cpatient story\u201d is an integral part of my life\u2014how do I parse that out? Why do we \u201climit\u201d a person to a slice of their life when it\u2019s intertwined into the fabric of their identity, their role(s), and more?<\/span><\/p>\n<p><span style=\"font-weight: 400\">I realize that my preference to move away from story is just that\u2014my preference. Others might appreciate using the terms \u201cstory\u201d or \u201cjourney,\u201d for the same reasons that I wish to move away from them. I live with a chronic incurable disease that is very much a part of my life. For others who live with conditions that are acute or curable, maybe recognising this experience as a small part of their life at one point in time is done better with \u201cstory.\u201d I fully recognise that this may be part of an effort to compartmentalise their experiences and place them \u201coff to the side,\u201d instead of allowing the experience to define a person.<\/span><\/p>\n<p><span style=\"font-weight: 400\">In order to recognise others\u2019 preferences, going forward, I\u2019m going to make an effort to consider terms like \u201cpatient experience\u201d or \u201cpatient perspective\u201d or as another Canadian patient advocate, Julie Drury, has said \u201cfact sharing, knowledge transfer, lived experience&#8230;\u201d. Words matter here and for me there is a need to move beyond stories. It seems that we view stories in healthcare as items we place on shelves or that have a neat start and end. We would be better to recognise that patient\u2019s experiences and lives are moving all the time, dynamic and changing. These experiences deserve to inform systems and system change, and be learned from rather than be viewed as static \u201cone time only events.\u201d Let\u2019s represent that better in the terms we use when we engage patients\u2014words matter deeply here. So long, patient story\u2014I\u2019ll be using the terms patient experience and patient perspective, ensuring I introduce these terms to others and when I work with patients, being certain that their whole perspectives are seen, heard, and most importantly, appreciated.\u00a0<\/span><\/p>\n<p><b><i>Dawn Richards<\/i><\/b><i><span style=\"font-weight: 400\">, PhD, is founder of Five02 Labs Inc, a boutique firm that provides scientific and patient based services to clients.<\/span><\/i><\/p>\n<p><b>Competing interests:<\/b><span style=\"font-weight: 400\"> Five02 Labs\u2019 clients include pharmaceutical companies (speaking fees, honoraria). Dawn is the vice president of the Canadian Arthritis Patient Alliance, a patient run, volunteer based organisation whose activities are largely supported by independent grants from pharmaceutical companies.<\/span><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The word \u201cstory\u201d can devalue a person\u2019s experience, as if it is not based on evidence, says Dawn P Richards [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2020\/01\/09\/dawn-p-richards-dont-call-my-experience-a-patient-story\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":44015,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5749],"tags":[],"class_list":["post-46413","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-perspectives"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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