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No-Show patients on conferences : Patients Included™

After a long period of setting up conferences, Pecha Kucha Nights TEDx-es etc where i tried over and over again to offer the stage to patients in one way or the other, i was reflecting on that a bit. We've succeeded in that in almost every aspect ...
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(repost of original post in 2010 on Posterous that terminated their service in 2012)
After a long period of setting up conferences, Pecha Kucha Nights TEDx-es etc where i tried over and over again to offer the stage to patients in one way or the other, i was reflecting on that a bit.

We’ve succeeded in that in almost every aspect of it. Not only on our Pecha Kucha Nights, or TEDxMaastricht conference with 5 patients (so 1/5th) just as our next one on April 2nd will have, on our TEDxRadboudU, of course our e-patientsbootcamp was RUN by patients, just like the night after where we invited physicians to bring their patients with them.
And at our Radboud REshape Academy we will be happy to have patients for free in the audience, next to fact that in every Masterclass will start with a patient story told by a patient.

Result of that i really can not imagine a conference anymore about healthcare with a NO-SHOW approach of patients. That is :

no patient IN the program,

no patient ON the stage or

no patient IN the audience.

As patients that is, it is too easy IMHO to state :
“well we are all patients” , “it is all about patients” or this one : “we KNOW what our patients want” well …..YOU DON’T.
Ever since i have appointed CLO (Chief Listening Officer into my REshape team,, we find on a day-today basis that you don’t. And that completely logical if one has only 7 minutes to spare with your patient.

Let’s stop talking about patients as if it where ” a third-person word”, as my friend e-patientDave states often.

This is just like people at your work are having a meeting about you…. without you, right ? These conference to me are what i call NO-SHOW-Conferences.

I’ve been around lately keynoting on conferences on this little blue marble, and over a year mostly start with the most important question : http://www.slideshare.net/lucienengelen/mhealth-conference-dubai-2010

Thinking about this lately there is only one right thing to do : NO-SHOW to these conferences!

And it’s time for change, time to step-up, or may be step down actually.

And that is precisely what i will be doing as of tomorrow, and wil be completing by April next, after addressing and stretching this whenever i can over the course of the upcomming year.

I will NO-SHOW on healthcare conferences that do not add patients TO or IN their program or invite them IN the audience also I will no longer speak at NO-SHOW conferences.

I ask you to do the same, only then we can make a statement and really change healthcare. It will take some time, including in our own surroundings, but just let’s start.

Start listening to (your) patients or to put it like one of our patients (mr Rene Tabak) told us at TEDxRadboudU recently :

“Do not look at me, but SEE me. Do not listen to me but HEAR me”

Conference organizers could use the logo below to state the support the NO-SHOW Patients Act so everyone can see that this is a Patients Included: conference.

Patients_included

It is downloadable as JPG or as PNG or TIFF or PDF and can be used free of right for conferences that have patients ON stage, IN the program or invited as patients to the conference.

Already supported i.e. by these great conferences : (send us a link in the comments to your conference if your support the Patients-Included-Act so would could update it from time to time)

It is a trademarked logo, and can be used in the context as described above, for non-commercial purposes.

26 reacties

  1. Lucien,As one of the patients you refer to, I very much appreciate your point of view.We patients are the most important stakeholders in medicine (because without us, medicine would not exist!) and yet, way too often we aren’t even a part of the conversation. It’s time medicine was practiced and delivered not TO patients or FOR patients or AT patients – but WITH patients. Many of us have developed platforms that are very useful and thought-provoking for providers, payers, the industry in general. We are participatory and collaborative, with good, creative ideas for improving everyone’s interface with the system. We understand that it’s not about making one stakeholder happy; that success means creating win-win-win opportunities.You’ll find excellent patient speakers at http://www.SpeakerLink.org – people who are available almost anywhere in the world, who can speak to a wide variety of topics.Thanks for raising your excellent NO SHOW points!Trisha TorreyEvery Patient’s Advocatehttp://HealthcareSpeaker.org

  2. NO SHOW will work: people who are invited to conferences must ask the obvious question – where are the patients and their advocates? Were they invited? Did we remove barriers from their participation? Did we place them on the agenda so that they have the opportunity to speak? If conference organizers have not accommodated the patient/advocates let them know you know about NO SHOW and will employ it if changes are not made! This is a partnership only when all partners are present and acknowledged!Thank you!

  3. Thank you Trisha and Joleen for your comments.Trisha : win-win is the ONLY way indeedJoleen : STEP-UP and be heard let’s get the word out. Commented on the great blogpost of Regina "all fields required http://reginaholliday.blogspot.com/2012/01/all-fields-required.htmlCouldn't be mire proud then on firt edition of TEDxMaastricht when as one of the patienst @ragnaja took the stage and after sharing her story got a standing ovation for minutes http://www.flickr.com/photos/48940975@N05/5588412679/in/set-72157626565150847/Or when my friend Dave ‘swallowed" the attention of the 800+ people including his "rap" http://www.flickr.com/photos/48940975@N05/5588989093/in/set-72157626565085073/

  4. Dear Lucien,Thank you for your powerful post. I was happy to follow up your statement with recommending the inclusion of patients from the first moment they communicate with a conference, during online registration. Thank you for tweeting about my post http://reginaholliday.blogspot.com/2012/01/all-fields-required.htmlI agree with you and Dave. We should all be asking at every conference where are the patients onstage and where are they in the audience. I think your no-show pledge is exactly what we need. Now let’s see who will take the pledge…-Regina Holliday

  5. Tnx Regina, instructed my speakerbureau today how to act on that for my bookings. It will take few months though, because of long term bookings. But over the next months i WILL meet more patients on conferences, OR have more family time 😉

  6. Thank You Lucien! And please let your speaker bureau know about SpeakerLink.org as it is a site focused on the patient story. Thank you for your strong stance on this important topic.

  7. A bold statement indeed! It is in line with what I’ve observed over the last few years — patients change the conversation on stage & off.The latest example happened just yesterday in Washington, DC, at the Care Innovations Summit. The agenda was dominated by clinicians and policymakers, each of whom shared fascinating insights about how the U.S. can pursue better health at lower cost. Atul Gawande was a particular highlight, ending with a thank you to everyone in attendance for joining in the "fight for the soul of medicine." But the one and only standing ovation was for the one and only person who spoke as a patient: Amy Berman, a nurse who went through treatment for breast cancer and shared her story.The first time I saw the power of patients on stage was the California HealthCare Foundation’s Chronic Disease Care conference in 2008.Ted Eytan captured it in a single photo:Patient Involvement Makes People Smilehttp://www.tedeytan.com/2008/11/07/2212I wrote about how the conference organizers went about including patients (don’t miss the excellent comment from Caron Lee of CHCF):http://e-patients.net/archives/2008/12/patient-voices-at-chcfs-chronic-disease-care-conference.htmlMore recently, I wrote about how the Connected Health conference in Boston was following Medicine 2.0 Stanford organizer Larry Chu’s lead by inviting patients and caregivers to attend free of charge:http://e-patients.net/archives/2011/10/conference-season-patients-and-caregivers-welcome.htmlI hope all of this is useful to everyone — conference organizers who are looking for ways to include patients as well as patients & caregivers who want to participate but aren’t sure how to get started.

  8. Congratulations Lucien for shouting it up and loud! I will quote your article in my intervention at a doctors’meeting next week: I had several discussions with the organizers to convince them that if they want to work with patients they would better meet them, talk to them, ask what they think about the services doctors offer….that is to officially ask the patients to participate and also give them the floor to talk about what’s important to them…

  9. Congratulations Lucien for shouting it out loud! Your post comes" a propos" as I will quote it at an intervention I will make in a physicians conference next week here in Athens. I have disccussed several times with the organisers about the need to include patients in the event both as speakers and as audience…. I can’t understand how doctors want to talk about services to patients, in the very absence of patients!! their "customers"… How do they know what patients want and need? Which are their preferences? What are their concerns? Doctors think they know everything and that they make always the best therapy options for the patient…As far as I know I will be the only invitee from the patients side….but I will go to this event, because I want to stand up and tell to the audience that they only have to gain by including patients in their discussions about the new model of medicine they aspire to establish..

  10. Thank you for posting this – this is so important. As a long time patient (20 yr cancer survivor), I can’t understand why patients are always overlooked! I’ve always said: "If you want to know what patients think, why don’t you just ask them?!"There are plenty of patients that are willing to step up and talk about these very important issues. It’s time!

  11. Thank you all for your comments. Let’s try to make this "act" completely obsolete within a year ;-)Ask when you are admitting to a conference, point them out to the initiative, mail them, call them ;-)I’ve posted this "act" also on facebook, Google+ and LinkedIn, so places enough to stumble upon and REshare etc.Looking from what came out of incorporating patients to our conferences, it is unbelievable we have to stress this out.

  12. Here. Here. My name is Amy Berman and I am the person who spoke as a patient at the Care Innovation Summit. It was an extraordinary experience to serve as the true north for innovation by suggesting that we need to incorporate the patients’ goals into their care. I told people that there are no wrong decisions, only informed decisions, as I described taking the less aggressive approach to terminal illness. I agree that we need patients to lend perspective to care redesign. That is in fact my day job. Bravo all. We need powerful speakers to step up. I for one am here. Warmly, Amy @jhartfound @notesonnursingPS You are welcome to read my blogs at http://www.jhartfound/org/blog or google "Can good care produce bad health" to read the first in the series.

  13. Thanks Lucien – a few years ago before CMS had 28 billion and ONC had 2 billion I often felt like the only voice of patient centered design in health IT and it was so challenging to keep up with the latest in healthcare if I can’t attend conferences like most other stakeholders do. I mostly spend time doing work setting up new organizations like NeHC – National eHealth Collaborative for ONC – where the only 2 seats that are dedicate are for patient advocacy groups, Beacon Advisory Board and HIMSS Board of Director – advocacy in Washington. Having people who know patient centered design helping to design organizations AND having actual patients speak at every event is critical. Even if our costs to watch are minimal there is always an opportunity cost since few of us are paid to do advocacy full time. Today for example in the US is a National Stakeholders forum for Patient Centered Outcomes Research Institute and it is streamed online but it takes time to watch and participate and few of us are paid to do so. What we also need is a way to mentor new people and patient advocates so that they can not only participate in events but connect to one another online and off.

  14. @cascadia it indeed starts with some opportunities. I Hope to contribute a bit with this "act" best to "brag" about it. regina suggested i.e. a downloadable poster people can paste to their booth on conferences. I am working on that.

  15. Agree that it is essential to have more patients at these event. Which is why whenever someone from Siren Interactive presents we always try to invite a patient or caregiver to join us. We just make sure that the patient/caregiver closes the session since they typically are an extremely tough act to follow.

  16. Lucien, I honor you and your work. My goal for sharing this information is my hope that it gives one more solid example of why we need: Patients Included. T1: What is the role of patient/family/public in attending a medical conference.http://www.slideshare.net/practicalwisdom/hpm-2162011 I was surprised to discover some of the participants that evening didn’t even think patients and/or patient advocates wanted to attend a medical conference. This Tweet Chat was just another opportunity for patients and patient advocates to help "open the eyes" to the fact that indeed patients want and need to be included in medical conferences. Patients are subject matter experts. Imagine my surprise and delight when seven months later patients and patient advocates were given scholarships to attend and present a panel discussion for Dr. Chu’s Medicine 2.0 Stanford. To be included in Medicine 2.0 was truly a remarkable event and this just further feeds my passion for the inclusion of patients.

  17. Lucien, I honor you and your work. My goal for sharing the following information is my hope that it helps give one more solid example of why we need: Patients Included. T1: What is the role of patient/family/public in attending a medical conference.http://www.slideshare.net/practicalwisdom/hpm-2162011 I was surprised to discover some of the participants that evening didn’t even think patients and/or patient advocates wanted to attend a medical conference. This Tweet Chat was just another opportunity for patients and patient advocates to help "open the eyes" to the fact that indeed patients want and need to be included in medical conference. Patients are our subject matter experts. Imagine my surprise and delight when seven months later patients and patient advocates were given scholarships to attend and present a panel discussion for Dr. Chu’s Medicine 2.0 Stanford. To be included in the Medicine 2.0 was a truly remarkable event and this just further feeds my passion for the inclusion of patients.

  18. Bravo. The Institute for Patient- and Family-Centered Care Made this commitment almost 20 years ago! We just completed our 5th International Conference in Washington, DC. In our call for papers we rejected outright any abstract that did NOT include a patient or family member as a presenter. I am proud to tell you that we had 966 attendees that went to 100 sessions. Each of the sessions had at LEAST one patient or family presenters-109 total. Of the 966 attendees 250 were patients and family members.Keep up the great work Lucien.

  19. Lucien,Visiting your page to use the seal again :), and reminded to include links to conferences who have taken the pledge.Here’s one:Permanente Executive Leadership Summit, 2012Details and photos: <A HREF="http://www.tedeytan.com/2012/06/13/10897">What “Patients included” looks like : 2012 Permanente Executive Leadership Summit</a>Thanks for creating a concrete view of what this participation looks like,Ted EytanWasihngton, DC USA

  20. Hey Lucien:The Institute just returned from our Hospitals and Communities Moving Forward with Patient- and Family-Centered Care Intensive Training Seminar in Ann Arbor, Michigan. We had 550 attendees-of those 65 were patients. 25 Faculty members, included 7 patients. Please add the Institute for Patient and Family Centered Care as an organization that will ALWAYS include patients and family members on the stage, in the audience, and as planners of each event. Keep up the good work and thank you.Joanna KaufmanBethesda, MD

  21. I am so happy to see so many conferences mentioned in the comments that are including patients. We are currently organizing our third annual Inspire: Health Care Quality Summit, which celebrates and recognizes all the work being done to improve health care in our province. Last year we had 700 attendees, including 20 patients. We also included a plenary presentation that included two different patient stories, and other breakout presentations that included patient presenters. This year, we are aiming for 40-70 patient representatives in attendance. All patients attending will have their registrations, travel, accommodations and other expenses paid for. And once again, we will have several patients on stage, sharing their stories, experiences and opinions. We wouldn’t have it any other way, and we will very proudly display the Patients Included logo on our materials. Jade GulashCoordinator, 2013 Health Care Quality SummitSaskatoon, Saskatchewan, Canadawww.qualitysummit.ca

  22. Lucien, you may add to the Patients Included roster – the 1st National Pateints Conference – Patients in Power-2012 – Athens Greecehttp://www.patientsinpower.gr/default.asp?pid=35&la=2and – #opnHealth hosts TEDxNijmegen -2013 – Thessaloniki – Greecehttp://bit.ly/11ODtWz

  23. You can add the Eular (European League Against Rheumatism) Congress, the largest congress in the field of rheumatic and musculoskeletal diseases (RMD). It always includes patients. In fact, Eular, as an organisation, has rheumatologists, other health professionals, and patients in its executive and we develop the congress and all consensus statements with persons who have RMD. We are all allowed to attend whatever session we want in the program and there are no restrictions as to where you can go, despite Pharma being upset at us…

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