{"id":13521,"date":"2012-10-30T13:29:15","date_gmt":"2012-10-30T17:29:15","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=13521"},"modified":"2012-10-31T02:57:23","modified_gmt":"2012-10-31T06:57:23","slug":"beginning-a-series-spm-members-thoughts-on-the-pcori-workshop","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/10\/beginning-a-series-spm-members-thoughts-on-the-pcori-workshop.html","title":{"rendered":"Beginning a series: SPM members’ thoughts on the PCORI workshop"},"content":{"rendered":"

\"PCORI<\/a>All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society<\/a>) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get.
\n__________________\u00a0<\/em><\/p>\n

This post started as a prolog to Kelly Young’s upcoming post, but at some point a prolog needs to stand on its own.<\/p>\n

Last weekend PCORI, the Patient Centered Outcomes Research Institute, held its first workshop on patient engagement in clinical research. It turned out to be a bold and, to some people (not\u00a0everyone), sometimes a difficult endeavor. I think it’s important that we chronicle this transition, this cultural change – because that’s what it is: nothing less than a big-time cultural change. So everyone’s expectations about roles are subject to question and ch\uf701ange.<\/p>\n

(Review:) About PCORI<\/strong><\/em><\/p>\n

We’ve posted before<\/a> about PCORI. Since its creation in the Patient Protection and Affordable Care Act (PPACA, “Obamacare”) PCORI has had some rocky times as the research establishment earnestly tries to learn how to think\u00a0like<\/em>\u00a0a patient and with <\/em>patients,\u00a0instead of thinking\u00a0about\u00a0<\/em>or\u00a0for\u00a0<\/em>patients. Sometimes, patients have responded in ways that basically mean “Are you even\u00a0listening<\/em>??? Do you even know what our lives are\u00a0like<\/em>???”<\/p>\n

This is a gulf, and the best way to cross it is to get together, in person.<\/p>\n

Much to PCORI’s credit,<\/strong> for this event they invited\u00a0patients to apply to be in the room, and even paid<\/strong> for their participation – a first, to my knowledge.<\/strong> In comparison, two years ago when several of us in SPM testified about Meaningful Use regulations, any time we contributed was donated (unpaid time off work), which is really <\/em>hard when someone is already sick\u00a0or trying to recover financially from illness. That’s one of the massive disconnects between real patients and well-meaning but healthy (unstressed) researchers or policy people.<\/p>\n

About this event:<\/strong><\/em><\/p>\n

PCORI not only paid for travel, and paid for people’s time; they scheduled this two-day event on a weekend,<\/strong> so attending didn’t require taking two days off work (plus travel time). Never in my time working with people in Washington has anyone done that.<\/strong> Kudos, PCORI! \u00a0(And salaried PCORI staff donated their own weekends. Thank you!)<\/p>\n

But then, the work started.<\/p>\n

The central question, in my view:<\/strong><\/em><\/p>\n

I couldn’t attend – months earlier I’d been booked to be out of town – but on my own site I posted a question: \u00a0Who gets to say what\u2019s patient-centered? (Hint: the one who\u2019s IN the center)<\/a>. I\u00a0said:<\/p>\n

The maturing seems to parallel how a kid grows up:<\/p>\n