{"id":19347,"date":"2017-03-03T16:49:07","date_gmt":"2017-03-03T21:49:07","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=19347"},"modified":"2017-03-03T17:14:33","modified_gmt":"2017-03-03T22:14:33","slug":"inviting-the-patients-perspective-paper-todays-needs-25-years-ago-this-week","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2017\/03\/inviting-the-patients-perspective-paper-todays-needs-25-years-ago-this-week.html","title":{"rendered":"“Inviting the patient’s perspective” paper: today’s needs, 25 years ago *this week!*"},"content":{"rendered":"

\"\"<\/p>\n

March 1, 1992.
\n25 years ago.<\/h1>\n

Yesterday I asked\u00a0When was \u201cEnriching the relationship by inviting the patient perspective\u201d published?<\/a>\u00a0The words in that paper’s abstract [right] could have been written today – literally every word. It was printworthy a quarter century ago Wednesday, and it still is today.<\/p>\n

Why? It’s\u00a0appeared here repeatedly: despite the scientific nature of medicine,\u00a0facts don’t change practice.<\/em> Something else is needed. And that’s a problem.<\/p>\n

\n

You see, participatory medicine is, above all else, a cultural movement, even more than a medical movement. We’re here as an activist organization, committed not just to talking about change but to creating it. So when facts are presented so healthcare could improve, and it doesn’t – the world doesn’t budge – it may be fine to consultants (they can sell reports about the lack of change), but to us it’s not.<\/p>\n

Trillions of dollars spent, and it hasn’t changed. And it’s not just the abstract that’s still true today\u00a0– here are more excerpts:
\n<\/p>\n

Doctors and patients find themselves drifting apart. As smaller and smaller players in ever growing systems, both we who offer care and those who seek it often keep a distance from one another.<\/p><\/blockquote>\n

Twenty-five years ago!<\/p>\n

We doctors are told how arrogant we appear, even as we wonder what is happening to the human side of care that attracted so many of us.<\/p><\/blockquote>\n

Twenty-five years ago! The paper continues:<\/p>\n

\n

In 1<\/span>988, my <\/span>coll<\/span>eag<\/span>u<\/span>es and <\/span>I <\/span>set <\/span>out t<\/span>o <\/span>l<\/span>earn <\/span>m<\/span>ore\u00a0<\/span>about <\/span>what m<\/span>a<\/span>tt<\/span>e<\/span>rs <\/span>to patient<\/span>s, <\/span>above a<\/span>nd beyo<\/span>nd th<\/span>e\u00a0<\/span>pri<\/span>maril<\/span>y <\/span>biomedical <\/span>aspect<\/span>s o<\/span>f th<\/span>e<\/span>ir <\/span>clin<\/span>ical mana<\/span>ge<\/span>ment. …<\/p>\n

Wh<\/span>a<\/span>t <\/span>d<\/span>id we l<\/span>ea<\/span>rn<\/span>? <\/span>Patient<\/span>s do not\u00a0focus on pretti<\/span>er\u00a0<\/span>waitin<\/span>g <\/span>rooms, be<\/span>tt<\/span>er <\/span>ho<\/span>s<\/span>pit<\/span>a<\/span>l <\/span>food, or <\/span>problem<\/span>s <\/span>with\u00a0<\/span>parkin<\/span>g.<\/p>\n<\/blockquote>\n

That one bowled me over because\u00a0every year\u00a0<\/em>at one conference or another I hear a hospital person say that to them, patient-centered care just boils down to patients whining about cosmetic things. Reality, though – even 25 years ago:<\/p>\n

\n

Rath<\/span>er, <\/span>th<\/span>ey are concerned abo<\/span>u<\/span>t <\/span>i<\/span>ssu<\/span>es of\u00a0<\/span>clinical <\/span>s<\/span>i<\/span>g<\/span>nifi<\/span>ca<\/span>nc<\/span>e <\/span>that h<\/span>ave nothin<\/span>g <\/span>t<\/span>o <\/span>do with <\/span>what\u00a0<\/span>w<\/span>e think <\/span>of as th<\/span>e doctor’s <\/span>” im<\/span>age\u00a0<\/span>or th<\/span>e h<\/span>ospi<\/span>ta<\/span>l<\/span>‘s\u00a0<\/span>“a<\/span>tmo<\/span>sphere.<\/span>” <\/span><\/p>\n

They want t<\/span>o <\/span>be ab<\/span>l<\/span>e <\/span>t<\/span>o <\/span>t<\/span>rus<\/span>t <\/span>the co<\/span>m<\/span>petence\u00a0<\/span>and efficie<\/span>n<\/span>cy <\/span>of th<\/span>e<\/span>ir <\/span>caregivers. <\/span><\/p>\n

Th<\/span>ey <\/span>want to\u00a0be <\/span>abl<\/span>e to <\/span>negotiate the <\/span>h<\/span>ealth <\/span>care syst<\/span>em effecti<\/span>vely\u00a0<\/span>a<\/span>nd <\/span>to be <\/span>treated wi<\/span>th <\/span>digni<\/span>ty and r<\/span>es<\/span>p<\/span>ect. <\/span><\/p>\n

P<\/span>a<\/span>t<\/span>ie<\/span>nt<\/span>s\u00a0<\/span>want t<\/span>o <\/span>un<\/span>der<\/span>stand how their <\/span>si<\/span>ckness or tr<\/span>ea<\/span>tm<\/span>e<\/span>nt <\/span>w<\/span>i<\/span>ll\u00a0<\/span>affec<\/span>t <\/span>th<\/span>e<\/span>ir <\/span>li<\/span>ves, a<\/span>nd <\/span>th<\/span>ey <\/span>oft<\/span>e<\/span>n <\/span>fear <\/span>that <\/span>th<\/span>e<\/span>ir <\/span>doctors\u00a0a<\/span>re<\/span>\u00a0<\/span>not te<\/span>lli<\/span>ng <\/span>the<\/span>m e<\/span>verything t<\/span>h<\/span>ey <\/span>know. <\/span><\/p>\n

Patie<\/span>nt<\/span>s\u00a0<\/span>worry <\/span>about a<\/span>nd <\/span>want <\/span>to <\/span>l<\/span>earn h<\/span>ow t<\/span>o care for them<\/span>selves\u00a0<\/span>away fr<\/span>o<\/span>m <\/span>th<\/span>e c<\/span>lin<\/span>ical <\/span>se<\/span>tting. <\/span>Th<\/span>ey want u<\/span>s <\/span>to<\/p>\n

focus on <\/span>th<\/span>e<\/span>ir pa<\/span>i<\/span>n<\/span>, <\/span>physica<\/span>l <\/span>disco<\/span>mfort, <\/span>and f<\/span>un<\/span>c<\/span>ti<\/span>o<\/span>n<\/span>a<\/span>l\u00a0<\/span>di<\/span>sabiliti<\/span>es.<\/p>\n

They want to disc<\/span>u<\/span>ss the <\/span>eff<\/span>ect th<\/span>eir illn<\/span>ess will h<\/span>ave on <\/span>th<\/span>e<\/span>ir <\/span>famil<\/span>y, <\/span>fri<\/span>e<\/span>nd<\/span>s, and <\/span>fin<\/span>ances.<\/p>\n

And\u00a0<\/span>they worry abo<\/span>ut th<\/span>e <\/span>future.<\/p>\n<\/blockquote>\n

Dr. Delbanco goes on to describe a 1991 paper he co-authored in the policy journal\u00a0Health Affairs<\/em>, “Patients Evaluate their Hospital Care: A National Survey” (free PDF<\/a>), which led to the thoughts in this paper. From the\u00a0Health Affairs\u00a0<\/em>paper:<\/p>\n

\n

It is now widely accepted that it is desirable to monitor and assess the structure, process, and outcomes of medical care when evaluating quality. In the past, process of care has been evaluated almost exclusively on the\u00a0basis of information available in medical records; patients\u2019 observations\u00a0are not usually included in quality assurance activities. Studies that elicit\u00a0reports from patients increasingly are viewed as an important method of\u00a0assessing hospital care.<\/p>\n<\/blockquote>\n

A few items from that paper:<\/p>\n