{"id":14791,"date":"2013-06-03T17:01:00","date_gmt":"2013-06-03T21:01:00","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=14791"},"modified":"2013-06-04T22:56:52","modified_gmt":"2013-06-05T02:56:52","slug":"patient-family-advisors-dont-say-you-volunteer-say-its-pro-bono","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2013\/06\/patient-family-advisors-dont-say-you-volunteer-say-its-pro-bono.html","title":{"rendered":"Patient-family advisors: “Don’t say you volunteer – say it’s pro bono”"},"content":{"rendered":"

\"Patients<\/a>Updated 6\/4 in response to Tony’s comment, described below.<\/em><\/p>\n

I’m speaking today at the fifth annual Patient & Family Centered Care conference, hosted by PFCC Partners in Long Beach, California. (They’re not related to the similarly named IPFCC.)<\/p>\n

At today’s lunch panel, a 17\u00a0year old patient advisor named Jack, from Flagstaff, Arizona, said he got some great advice (from co-panelist Tony White – see his comment below<\/a>) that I think all such advisors and advocates should adopt:<\/p>\n

“Don’t tell people you volunteer at the hospital –\u00a0<\/strong>
\nsay you’re doing it\u00a0pro bono<\/em>.”<\/strong><\/p>\n

“Pro bono<\/em>” is short for “pro bono publico<\/em>,” which is Latin for “for the public good.” It’s the term professionals use (e.g. attorneys) when they\u00a0donate\u00a0<\/em>valuable services instead of being paid.<\/p>\n

Why does this matter? Because in any field, there’s a clear differentiation between things people get for free and things they pay for. (Ever heard the expression “You get what you pay for?”) Lucien Engelen’s Patients Included movement<\/a> calls for every medical conference to subsidize patient participation; today the norm in that movement is that patients aren’t\u00a0charged\u00a0<\/em>to participate, and sometimes have their expenses paid … but they must still take time off work, and even if they’re retired or unemployed, they still must donate their time.<\/p>\n

It can be downright insulting (or just silly) when a host protests, as I’ve been told: “But, but, your voice is\u00a0really important\u00a0<\/em>to us.”\u00a0Early in my speaking career I sometimes replied, “Really important, and worth exactly $0? I’m sorry, my schedule won’t allow that.”<\/p>\n

I don’t want to tell patients to stop volunteering – but it’s time for us all to recognize that there’s real value in what patients contribute. So let’s call it what it is: donated contributions of time and thought.\u00a0Pro bono publico\u00a0<\/em>– for the public good.
\n_____________<\/p>\n

Update 6\/4:<\/em><\/p>\n

In Tony’s \u00a0comment he points out that there’s something distinctive about the specific role of the patient \/ family advisor – a specific set of skills. I’ve never done that job but my gut says I’d agree. And I think that’s a good rule of thumb for the difference between “just volunteering” (e.g. giving directions to hospital visitors) and contributions of specific skills. What do you think?<\/p>\n

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

Updated 6\/4 in response to Tony’s comment, described below. I’m speaking today at the fifth annual Patient & Family Centered Care conference, hosted by PFCC Partners in Long Beach, California. 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