{"id":18976,"date":"2016-07-31T17:59:25","date_gmt":"2016-07-31T21:59:25","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=18976"},"modified":"2016-07-31T17:59:55","modified_gmt":"2016-07-31T21:59:55","slug":"unmarried-teens-would-jump-off-bridges-ny-times-on-suppression-of-home-tests","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2016\/07\/unmarried-teens-would-jump-off-bridges-ny-times-on-suppression-of-home-tests.html","title":{"rendered":"“Unmarried teens would jump off bridges”: NY Times on suppression of home tests"},"content":{"rendered":"

<\/a><\/p>\n

A large part of the Society for Participatory Medicine’s work is culture change, and that requires pointing to the cultural roots of today’s situation, so that well-meaning people today can understand how we got here, and how absurd today will look in the future.\u00a0I’ve rarely seen a better example than in today’s New York Times op-ed<\/a> by Pagan Kennedy<\/a>, who is known (among many other things) for her writings about world-changing inventions.<\/p>\n

As the screen capture at right suggests, the underlying myth was “Patients can’t handle the truth.” It exactly echoes physician sentiment about patient access to medical records via OpenNotes<\/a>, as we’ve often written.<\/p>\n

But “knowledge is power,” as\u00a0Sir Francis Bacon said centuries ago, as\u00a0SPM co-chair Dr. Danny Sands often cites\u00a0in his speeches. And lo and behold, some patients\u00a0want\u00a0<\/em>knowledge and the power it brings.<\/p>\n

The column\u00a0tells how in 1967 Margaret Crane imagined, and developed, a home pregnancy test(see photo above) that mimicked what her employer sold, and how the company thought it was a terrible idea. If you have online access to the Times, read it<\/a>; if you don’t, here are some\u00a0tidbits:<\/p>\n

The company\u2019s market was doctors, and doctors would hate this product that made their services seem less necessary.<\/p><\/blockquote>\n

This\u00a0reminds us of the travails of SPM member and ICD patient Hugo Campos<\/a>, who wants his device data – but its maker Medtronic says, “You’re not our customer – the doctor is.” And:<\/p>\n

[Crane’s] managers seemed terrified by scenarios in which hysterical women killed themselves. \u201cWhat if a senator\u2019s daughter, unmarried, found she was pregnant and jumped off a bridge?\u201d one asked.<\/p><\/blockquote>\n

Ah, we see: your company is the priority. And:<\/p>\n

Pharmaceutical companies were afraid of antagonizing doctors and aligning themselves with the \u201cfast women\u201d who desired a fast test.<\/p><\/blockquote>\n

Of course, not a soul expressed concern about the men<\/em> involved with those “fast women,” much less their<\/em> responsibility for any\u00a0panic experienced by\u00a0that imagined senator’s daughter. That’s a rant for another day, but it does echo our previous posts<\/a> on our movement’s parallels with feminism.<\/p>\n

Patient-centered vs business-centered:<\/h3>\n

Our point here is that Crane saw that\u00a0the patient\u00a0<\/em>would want the product, but\u00a0the business managers were decisively more interested in what their customers (the doctors) wanted.<\/p>\n

If you don’t have Times<\/em>\u00a0access, Eric Topol (author of The Patient Will See You Now)\u00a0<\/em>tweeted photos<\/a> of the article, calling it\u00a0“A dark example of how the medical profession underrates human beings.” (Thanks, Eric, for drawing our attention to this!)<\/p>\n

Historical notes:<\/h3>\n

This is Kennedy’s\u00a0second article about the invention of the home pregnancy test. As today’s column notes, when she first wrote about it<\/a> in 2012, the real inventor (Crane) wasn’t known yet, but she\u00a0stepped forward and contacted Kennedy.<\/p>\n

Wonderfully, the Smithsonian Institution has since purchased that original prototype. So the vision of\u00a0that 26 year old woman has a rightful place in history, and the patient perspective has prevailed – despite the views of the men who felt that their\u00a0company’s\u00a0<\/em>needs were more important.<\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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