My open letter to “Patients Included” conferences

6 Mar

different red chair

by Carolyn Thomas  ♥  @HeartSisters

Dear medical conference organizers,

Thank you so much for inviting me to participate in your conference later this year. It is a real honour to be asked to help represent the patient voice at your prestigious event. I know that inviting patients alongside your impressive international roster of well-respected physicians is new to you. So congratulations on embracing the increasingly important “Patients Included” movement sweeping through medical conferences.

But as I once wrote to patient blogger (and conference speaker) Carly Medosch:

“I can no longer afford to be ‘honoured’ by any more medical conference invitations.”

Allow me to explain:

The fact that you’re considering adding a patient perspective is a positive indicator of a progressive organizational shift in thinking (as already demonstrated in accredited Patients Included conferences like Doctors 2.0 & You, The Beryl Institute Patient Experience Conference or Health Quality Transformation – just three of many high-profile examples of this growing trend).* As you likely know, Lucien Engelen of Radboud University Nijmegen Medical Center in the Netherlands coined the term Patients Included in 2010. He defined this global trend as specifically inviting patients to be “on the program, on the stage, and in the audience.”

But when you assure me how important it is to you that I participate in your program, it occurs to me that what you’re actually saying is that you are in fact looking only for a very specific kind of patient.  For example: 

The ideal invited patient:

  • must live in the city in which your conference is being held (this would mean the patient could easily commute to the convention centre every morning – because you’re not offering any travel reimbursement for out-of-town patients), or
  • must have friends/relatives who live in the conference city (this would mean that – assuming your patient might be able to scrape together the cost of airfare – they would also have a free place to crash overnight for 2-3 nights – because you’re not offering any hotel reimbursement), or
  • must be employed in the healthcare sector (so their employers will continue to pay their regular salaries while providing an expense account to fully cover all related costs of attending), or
  • must be self-employed (so that they can write off their travel/hotel/per diem costs as tax deductions – because you’re not offering any compensation for those who will lose a full day’s pay or an entire vacation day for every day they’re at your event), or
  • must be independently wealthy (so they don’t have to worry at all about how they’re going to pay for flights/hotel or a few days’ lost income), or
  • must not be sick at all (so you don’t have to worry at the last minute that they might be too ill to travel, too ill to get out of bed, or too ill to speak).

In other words, the ideal patient you seek is local, well-connected, well-off, and – most importantly! – NOT ACTUALLY A PATIENT.

If the physicians representing your organization actually understood this reality, it’s  highly unlikely you would propose that invited patients should book their own flights, pay for their own hotel accommodation, and undergo gruelling physical stressors that few healthy event organizers can even imagine – all so that you can check off the “Patients Included” tick box.

As I wrote here, Dave de Bronkart is arguably the most famous professional patient out there (often better known as ePatient Dave). He’s the co-author, with Dr. Danny Sands, of the really useful book called Let Patients Help: A Patient Engagement Handbook. After surviving stage IV kidney cancer in 2007, he became a blogger, health policy advisor and a professional international keynote speaker representing the patient voice at health care conferences.

Yet Dave himself wrote about the irony in telling patients that their voice is valuable.

“People need to remember that although I advocate for listening to patients, I myself am only one – and I was only sick for six months.  Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.

“Want to know if you have ‘Patients Included’? Ask this: Are there any actual sick people in the room?‘”

Mandi Bishop, a self-described health data geek who works for Dell Health (meaning she gets an expense account to attend her conferences), likely agrees with Dave, as she explains here:

“I don’t know about you, but if my employers ‘invited’ me to go to (this conference), agreed to pay for my conference registration, but then ‘asked’ me to write an article for them about the conference (and their generosity in sending me) after I had to give up five days of vacation and pay more than $1,500 in travel and expenses out-of-pocket, I’d tell them to shove it where the sun don’t shine.

Why do we expect patients to be grateful to be minimally included when we treat them this way, if we include them at all?”

The toll this inclusion can take on so many of us may be difficult for those living with the luxury of healthy privilege to comprehend.

I’ve learned by now, for example, that (because of ongoing cardiac issues) I’m no longer physically able to do afternoon or evening presentations. I’ve learned that I need to rest well in advance just to be able to show up for a daytime event. I’ve learned that I need to spend even longer trying to recuperate afterwards from the resulting exhaustion of such attendance. Throw in out-of-town travel of any kind, and you are looking at a very sick person by the end of it. 

Some progressive conferences (like Stanford University’s annual Medicine X) have attempted to address these burdens for those accepted as e-patient scholars. MedX offers conference registration/travel/hotel bursaries to those who qualify. They include patients on planning committees. They set up a separate patient dining area so we don’t have to stand around trying to balance a breakfast plate, coffee cup and conference materials while shaking hands in the buffet line. They even came up with the brilliant concept of a quiet on-site Patient Lounge, complete with a row of recliners for our naps (although when I attended MedX in 2012, I met physicians lying down in the Patient Lounge right alongside us).  See also: “We are all patients.” No, you’re not.

Here’s a small example of the physical price that some chronically ill patients pay to participate in important health awareness events.  Over the years, I’ve done many media interviews in my role as a heart patient, blogger, speaker and (my favourite job title, as described by the Vancouver Coastal Health Research Foundation last year) a knowledge translator. Most interviews are via phone or email, and can be nicely completed in my jammies at my kitchen table.

But one such interview request two years ago came from CBC, our national broadcaster, who on short notice wanted a quotable quote from a real live heart patient in response to emerging Canadian cardiac research. And because it was for national news on television, they requested an in-person interview on camera. I was glad to oblige. The CBC producer in Toronto quickly arranged my return float plane trip from my island home here in Victoria to the mainland city of Vancouver to be interviewed by a CBC camera crew there in time for that evening’s national news broadcast.  The end result included my on-air response to said research.  It boiled down to about 17 seconds in total.

In order to provide CBC with that 17-second sound bite, it cost me over five hours of my life counting travel, waiting around for light/sound checks, and taping. Those were five exhausting hours I will never get back, and more importantly, they required even more hours of recuperation in a debilitated heap once I finally got home.

Was all that worth the 17 seconds of air time?

No.

Would I do it again?

No.

So why did I say yes in the first place?

I said yes for the same reason that so many patient activists living with chronic illness say yes to conference invitations: to help get the patient voice heard, and because we passionately believe that what we’re writing/speaking about is important for the public to know.

Carly Medosch, who blogs at Chronic Carly, wrote her own frank assessment of health conferences that expect her and other invited patients to work for free:

“I did not choose to volunteer for fame and profit. I made the decision once I was healthy enough to have energy to spare. Above all, I wanted to help educate fellow patients and help fill the huge gap in education and information in my town.

“My major beef is with organizations that use emotions and cultural expectations to extort free work from patients and their loved ones. You wouldn’t ask a plumber to work for free, but many people think it is okay to ask patients to work for free. And patients do work for free because our causes are so personally important to us, and are sometimes even matters of life or death. 

“I believe that some organizations know they can get away with it, so they do.

“Organizations can even play on emotions to devalue the work of patients. Organizations often send the message (intentionally or passively) that the reward is the warm fuzzy feeling of helping others, or possibly even helping yourself by funding research that could cure your disease.

“If your organization is not also using these same manipulative tactics on doctors and professional consultants, then you are discriminating against patients.

“The more patients are willing or emotionally coerced into performing professional work without compensation, the more organizations will come to expect free work in the future.”

Can you sniff out the irony here? 

A person like me living on a (very modest) fixed income because of ongoing cardiac issues is asked to pay a high price (both financially and physically) in order to speak to a room filled with wealthy physicians and hospital bureaucrats who may have no idea of what it takes just to get a person like me into that room.

Screen Shot 2016-03-07 at 1.49.55 PM
Illustration by Tracey Levasseur

Family members who care for patients are not immune to this kind of invisibility as well. Consider Winnipeg’s Donald Lepp, for example. Donald’s an active caregiver advocate for two important family reasons: he’s been the caregiver for both his son who has undergone a heart transplant, and for his wife who has a congenital heart condition.  He told me recently about being asked on short notice to step in for the (paid) keynote speaker who was suddenly unable to fly in from Toronto to speak at an event in Winnipeg called, ironically: “Patients as Partners in Health Care Research”. 

His payment for being the last-minute keynote speaker? 

A handshake.

As Donald explained to me:

“Honestly, I felt treated like the keynote was downgraded to a ‘patient story’. They couldn’t get a ‘real’ expert, so they thought they’d get an emotional patient story instead.

What I see here is a huge cultural problem where public engagement is equal to patient engagement. No distinction. It buys into the myth of ‘We are all patients‘.”

But it’s not only about those financial or physical costs.  Toronto patient and family representative Kate Robson was asked to speak at such an event, as she described to me:

“At a recent conference focused on maternal and child health issues, I was surprised to see that the only speakers who did NOT have their biographies included in the conference program were the patient and family representatives.”

“It made it hard to feel like we were there on the same footing. The organizers did try to support us in other ways, but they still did not understand the costs we incurred to be there, nor did they acknowledge that we should be presented and introduced in the same way as all the other invited speakers.

“At the end, I was given a $10 gift card for my contribution.”

So what I’m most concerned about is the potential chasm between your desire to do the right thing (fostering a Patients Included focus at your event) and the profound shift in both attitude and policy that such a move realistically requires.

Even if you can’t afford to offer appropriate funding to your invited patients, or if your patients are not physically able to travel to your venue, novel options already exist for allowing a broad breadth of patient voices, but only if you’re willing to accommodate the needs of those living with a chronic illness diagnosis.

I’ve also done remote presentations, for example, to audiences attending a range of faraway events, from conferences in Boston and Toronto to the University of the Philippines College of Medicine. These virtual presentations were possible by speaking live on the Day Of via webinar or laptop microphone, with or without slides (yes, often while in my jammies at that kitchen table!)

It’s time to rethink how medical conference organizers choose to host a Patients Included event in the future – and that may  mean you need to go far further than just funding.   As Dr. Tessa Richards wrote in the British Medical Journal (BMJ) last year:

“Patient delegates are different to other delegates and their participation in meetings must be funded. Unlike health professionals, few are backed by organisations who can pay the (often high) conference fees.

“Patient involvement should extend to participation in conference steering committees so they can play a part in selecting themes, make up of sessions, and who speaks at them.”

Inviting patient participation is not the same as inviting one of your professional peers, in more ways than merely the most obvious.  We don’t have the letters M.D. after our names, we haven’t been to med school, we lack the years of clinical experience your usual participants have. But despite that reality, as more and more conference organizers are wisely concluding, inviting patients can make your event better in remarkable ways.

Dr. Gia Sison is a specialist in Occupational Medicine and is herself a breast cancer survivor who reminds her physician colleagues:

“Patient participation in healthcare conferences is needed.  The patient voice MATTERS.  It leads us and we learn from each other, in my opinion as a physician.”

If you and your organization are sincere in including the patient voice in a meaningful fashion, this also means a change in the way you invite patients to help make those events even better.

Kindest regards,

Carolyn calligraphy

.

 

.;

..

* Find out if the conference you’re planning is eligible for the Patients Included designation if you are specifically inviting patients to be on the program, on the stage and in the audience. Conferences applying for Patients Included accreditation must demonstrate five key event qualifications that meet the criteria for such accreditation. Some successful  examples include 2015 Doctors 2.0 & You;  2015 Health Quality Transformation;   Concordium 2015: Data and Knowledge Transforming Health;  2015 Hacking Health REshape;  2016 BC Patient Safety and Quality Council Forum;   2016 National #HCSMCA Symposium;  2016 Patients as Partners and  2016 CADTH Symposium.

 .

Q:  How should health conferences that invite specific patients to attend be prepared to support these patients?

See also:

.

 

 

36 Responses to “My open letter to “Patients Included” conferences”

  1. maryocmack March 23, 2016 at 6:36 am #

    Holy Moly, what a terrific piece of writing. Thank you for writing it.

    I have lived with chronic heart disease for many years and I am so angry at the entire medical industry. From the life-threatening dismissiveness and arrogance of the world’s top doctors to the general and overwhelming devaluing of patients in every conceivable way. It’s chronic discrimination and it has always been accepted.

    They don’t want to change. They like everything just the way it is. If patients are at the conferences, they can’t tell all their patient jokes, right? It’s been an exclusive club and we ain’t in it (but we generate billions for the industry). Membership is opening up and it’s about effing time. Patients are smart and many times know more than the doctor providing the care.

    Medical literature has been available online for years, many patients are highly educated now about their condition. Listen doctors and you will learn.

    Liked by 1 person

    • Carolyn Thomas March 23, 2016 at 7:39 am #

      Thanks for your perspective, Mary. Luckily there is a growing number of health care professionals who DO value the patient presence/participation/input. But it’s not going to happen overnight. As one physician I quoted said: “All day long I listen to patients’ stories. Why should I have to listen to more of them when I go to my medical conferences?” (Those guys WILL eventually retire!) and that exclusionary attitude will fade – it may take one more generation of med students however. PS: You might be interested in reading about Dr. Rosamund Snow’s interesting research on what happens when patients know more about their diagnosis than their docs do.

      Like

      • maryocmack March 23, 2016 at 7:58 am #

        Hi Carolyn, thank you and yes I read that quote just a few days ago actually. Such a head shaker. I am extremely glad that change is starting to take place, albeit at a glacial pace. There is much reluctance to change and you are right it won’t happen quickly. I will google Dr. Rosamund Snow. My experience relates to knowing, yet I was continually dismissed by doctors. I suspect my experience is not uncommon. Thank you again– change is so very needed.

        Liked by 1 person

  2. Andrew Spong March 7, 2016 at 10:22 pm #

    I’d ask all readers of this excellent article to go to patientsincluded.org and read the charter.

    Want to get your travel and accommodation paid in advance as a patient speaker?

    The answer is: boycott all events that aren’t officially accredited as Patients Included on the website.

    Why?

    Because prepayment of patient speaker travel and accommodation in advance is a condition of self-accreditation. Check out the links to the accreditation posts on the official PI conferences page to see what these events have done to ensure patients are neither excluded from nor exploited by conferences.

    PI conferences must also offer a minimum of two scholarships for patient and/or carer delegates.

    Oh, and please sign the charter while you’re there. You can see who the co-authors and founding signatories were, too.

    Please use the #patientsincluded hashtag on Twitter if you’ve any specific comments.

    Liked by 2 people

    • Carolyn Thomas March 8, 2016 at 5:35 am #

      Thanks again for clarifying that, Andrew. I’d change the word “want” to “need” (to get travel/hotel costs pre-paid in advance). In my case, paying upfront for these expenses, and then waiting months for reimbursement, would result in severe hardship. (I heard from one patient-speaker this week who’s still waiting for reimbursement from an April 2015 event).

      I was recently invited to attend a national conference (on my own dime, of course) at which the tony hotel’s “special conference rate” was over $250 per night, an impossible cost for me. Conversely, I told organizers of the last two conferences I did attend that I could not even consider their kind invitation unless they booked my flight/hotel from their end on my behalf. This option, each insisted, was NOT their usual “policy”, but next thing you know, they somehow made it happen, so I was able to attend. When organizations blame bureaucracy for “how things are done around here”, the excuse can exclude patients who simply cannot afford to pay and wait.

      Liked by 1 person

      • Andrew Spong March 8, 2016 at 6:28 am #

        This is SUCH an important distinction to make, Carolyn, so: thank you.

        Only yesterday, I found myself commenting once again that events that won’t fund patient faculty in advance are effectively self-selecting those who can bridge-fund, and that forcing those stoic patients who are determined to participate — despite the numerous oversights, slights, and humiliations they endure — to serve as credit sources for conference organisers is what made me get involved in Patients Included in the first place. It’s unethical, it needs to be called out, and most importantly: it has to stop.

        Finally, the literature frequently reminds what common sense tells us, namely that socioeconomic deprivation and poorer health outcomes are closely associated. Electing not to pre-fund and thereby facilitate the participation of patients living in economic adversity (often, for obvious reasons, as a consequence of a condition(s) they are living with) is a great way to ensure that their insights are never heard, and their underserved needs are never understood, and therefore never met.

        Liked by 1 person

        • Carolyn Thomas March 8, 2016 at 6:42 am #

          Exactly. This self-selection of only those who can afford to attend, and expecting impoverished patients to “serve as credit sources” for multi-billion dollar academic institutions = just wrong.

          Liked by 1 person

          • Isabel Jordan March 10, 2016 at 5:11 pm #

            There are some conferences that also say they can pre-pay ‘if asked’. I find this incredibly unethical as it forces patients/caregivers to put themselves in an unenviable situation of going to them hat-in-hand, disclosing financial hardship, asking for crumbs in order to participate. And again, self-selecting for those who are ok with doing this.

            Who gets left out of this conversation?

            Liked by 2 people

            • Carolyn Thomas March 10, 2016 at 7:54 pm #

              Good point, Isabel. I suspect that many good people who might be excellent patient/caregiver representatives at conferences simply don’t apply if it means grovelling for pre-paid travel funding as a condition of being able to attend. So the status quo continues: the privileged who can afford to pay, go – and those who can’t afford it, don’t.

              Liked by 1 person

            • Dave deBronkart (@ePatientDave) March 11, 2016 at 1:50 pm #

              Gosh, Isabel, I’d encourage ALL patients to take a thoroughly empowered view about asking for support: WE (you!) are the ones with the vision, giving THEM the insight on how to get to the promised land.🙂

              Seriously, I used to say things like “I’d LOVE to participate … I don’t work in the industry, so I need to ask for X Y Z – will that work?” Sometimes that was expense money, sometimes it included a fee … I find that conference organizers are SOMETIMES inconsiderate sponges (only want to sell events where they can get everything free) but other times they’re entirely open, and simply NEW to this world of inviting patients.

              Anyway good luck to all, and power to the people!

              Liked by 1 person

  3. Nicole (Nikki) Seefeldt March 7, 2016 at 9:57 am #

    This is an issue that has bugged me for quite some time. I laud you for putting this out there Carolyn. Also there’s a big question mark here too that even if they do include patients, are these conferences fully accessible to all participants including the patients? In many cases, often not.

    The nonprofits I’ve volunteered for, while not compensating, have often arranged for my travel and expenses to be covered through a grant which to me means they value my participation more than me just standing there, even if they don’t have the means to offer honoraria. I make an exception because I have personal relationships with these organizations & I knew if they could offer more, they certainly would. But at minimum, they make sure I’m covered and taken care of for the duration.

    I don’t see why this is such a huge deal for other conferences to consider or get a handle on as far as a small honorarium and travel grant. It’s well within their means. I know they do it for professionals all the time. That population certainly doesn’t work for free, you’re right – why should we?

    And I’m not even talking about earning a living doing it, that’s not what I’m after. I’m actually after increasing dialogue and fostering relationships between the two communities. I just don’t see why it’s too much to ask that the same professional courtesies be extended to me as speaker or participant that other speakers or attendees would have extended to them. I reblogged this on my blog by the way because I think it’s an issue that needs more attention and care.

    Liked by 2 people

    • Carolyn Thomas March 7, 2016 at 2:51 pm #

      Nikki, you’ve hit upon a core issue, which is WHY so many patients are so willing to step forward to participate (however that looks) and usually with little or no support, financial or otherwise. Every time we do this, we are teaching event organizers that they don’t need to worry about acknowledging such participation in the same way they know they must do with (paid) speakers. As you say, it is about increasing dialogue and fostering relationships – but along with those important goals should come a realistic assessment of fairness.

      Liked by 2 people

  4. Nicole (Nikki) Seefeldt March 7, 2016 at 9:48 am #

    Reblogged this on AS I LIVE & BREATHE and commented:

    “Carolyn Thomas says it much better than I could. This has been on my mind awhile. I just couldn’t articulate the frustrations as nicely & succinctly as she does here in this post. Worthy of a reblog! Thank you Carolyn for “getting it” & putting this issue out there to conference organizers. Participation shouldn’t be tokenism.”

    Liked by 1 person

  5. Alise Pritchett March 7, 2016 at 7:01 am #

    Well written. Also a reality check for the hosts of these events and doctors. Patients need to be heard from a patient’s point of view. If doctors and event hosts haven’t walked a mile in a patient’s boots…and clearly and sympathetically understand what makes a “patient”, …then we’ll always be “minimally heard”.

    Liked by 2 people

  6. Dave deBronkart (@ePatientDave) March 7, 2016 at 4:11 am #

    Carolyn, thank you for this; it’s one of the best things I’ve read on the subject, a good broad exploration of the issue.

    For those who haven’t seen it yet, I wrote several years ago about how I had to wear ratty boxer shorts because of the financial challenge of trying to get the medical industries to value patient voices. I literally could not afford new underwear.

    For me those days are past – but it’s taken me FOUR HUNDRED AND FIFTY EVENTS to get to where I’m actually making a living. And as you correctly quoted, I wasn’t still sick when I did that. And I’d been a trained public speaker before illness … my argument has always been what the Institute of Medicine called for in 2012 (Best Care at Lower Cost, Table S-2):

    “The learning health care system is anchored in patient needs and perspectives.

    How you gonna do dat if you ain’t got no patients in da room while you talkin’ about dem?? You ever had someone else try to represent your perspective while you not there??

    When the IOM said that, I thought “That’s it – game over! Now the ESTABLISHMENT says it!” But I didn’t yet fully understand that word travels slow in medicine – ironic, since so many clinicians tell patients to shut up and trust ’em. 🙂

    Re MedX – although Larry says MedX doesn’t qualify, I’ll say any criterion that MedX doesn’t fit is a criterion that needs to change.:-) At MedX patients aren’t just included, they ARE the conference. They’re the whole point. In fact in Lucien’s post on the BMJ Blog that you linked to, MedX was at the top of his list of exemplars.

    (Also, I don’t think that list of criteria is Lucien’s – I think Andrew added it, and knowing him, I imagine he’s more than willing to tweak when something doesn’t make sense! The proof of the pudding IMO is that if conferences even REMOTELY resembled MedX, it would have been redundant to even talk about the subject.)

    Liked by 1 person

    • Carolyn Thomas March 7, 2016 at 9:09 am #

      Great to hear from you, Dave (and thanks for being so eminently quotable, as always!) Your ratty boxer essay (Readers! Dave’s post is a good illustration of what we’re talking about here, so don’t miss it) includes these examples from your own patient experience:

      “Time after time people invited me to come…
      – speak for free
      – advise their company for free on the phone
      – attend policy meetings for free”

      This reality mirrors what Carly Medosch wrote as well:

      “The more patients are willing or emotionally coerced into performing professional work without compensation, the more organizations will come to expect free work in the future.”

      Thank you again for all you do, Dave – and good luck at your Johns Hopkins presentation next week!
      cheers,
      C.

      Like

    • Andrew Spong March 7, 2016 at 10:26 pm #

      You ‘think I added it,’ Dave? No, that would be the co-authors – who included you, by the way! See http://patientsincluded.org/authors/

      Liked by 1 person

      • Dave deBronkart (@ePatientDave) March 8, 2016 at 1:57 pm #

        Bless you for your clarification.🙂 If I’m a co-author then I’m in the “gunsights” of my advice to fix the criterion! Game on?

        Liked by 1 person

  7. Sisu (means courage in Finnish) March 6, 2016 at 1:50 pm #

    Hello Dear Carolyn: Love your new calligraphic signature! If you are the artist, congrats! If someone else did this as a gift, please give a shout-out for the fine work! ~ Or did I miss the acknowledgement in an earlier post? Thanks for all you do in serving us novice heart patients. Your vocab list was especially helpful to me!

    Liked by 1 person

    • Carolyn Thomas March 6, 2016 at 6:50 pm #

      Hi Sisu — I wish I had, but I never did get the name of that calligrapher (she was at a craft fair booth doing free demos for the crowd). Thanks for your kind words.

      Like

  8. Andrew Spong March 6, 2016 at 7:45 am #

    Carolyn, all your observations are valid. However, these are the sort of things that need to be discussed *within* a conference setting. Events that self-accredit as #PatientsIncluded, adhering to the five criteria set out at patientsincluded.org, create the conditions of possibility to allow this to happen. I can’t speak to conferences that elect, for whatever reason, not to self-accredit at #PatientsIncluded.

    Liked by 1 person

    • Nicole (Nikki) Seefeldt March 7, 2016 at 10:06 am #

      Andrew: But how are these discussed within the conference setting if the opportunities to attend are not there? I agree in part, but not in whole. I get the other side of the coin with the planning as I’ve done that work on behalf of organizations too but it’s frustrating that this dialogue can’t occur outside that setting as much. Because also part of the issue is that patients aren’t asked what their attendance needs are in equal weight with what professionals need in most cases. Yes, there may be exceptions to that (I realize).

      Liked by 1 person

      • Andrew Spong March 7, 2016 at 10:33 pm #

        Hi Nicole. Absolutely! Which is why I’d recommend boycotting events that are NOT listed here, or badgering conferences you want to support to self-accredit as official Patients Included events.

        Why? Because if they do so, pre-payment of all patient faculty travel and accommodation in advance are a condition of self-accreditation.

        Liked by 2 people

  9. Andrew Spong March 6, 2016 at 7:37 am #

    The official #PatientsIncluded charter was launched in May 2015. Only conferences listed at patientsincluded.org, adhering to the charter’s five requirements, are accredited. Some of the conferences listed above (eg #MedX) are not associated with #PatientsIncluded.

    Liked by 2 people

    • Carolyn Thomas March 6, 2016 at 7:51 am #

      Thanks for that clarification, Andrew. I’ll modify my list. I’m absolutely stunned that MedX is NOT associated with #patientsincluded – given that this event is so often held up as the patient-inclusive model for all other conferences to emulate. The website lists only nine conferences worldwide that have qualified for this accreditation, or is it just that others have not bothered to officially apply?

      Liked by 1 person

      • Dr. Larry Chu March 6, 2016 at 8:43 am #

        Hi Carolyn,

        Medicine X does not meet the criteria to be a PatientsIncluded meeting. PatientsIncluded only requires 2 patients at a meeting and therefore mandates all travel be pre-paid in advance of the event. Medicine X brings 40+ patients/year to our event and pre-paid travel for such a large number of patients is not feasible.

        I wish PatientsIncluded had involved or included Medicine X when they were drafting their charter, we could have given them advice since we have been leading the way in patient inclusivity since 2011 and have extensive experience in the operations, logistics and requirements to bring patients to medical conferences.

        However, according to their charter, Medicine X cannot be a PatientsIncluded meeting.

        Liked by 2 people

        • Carolyn Thomas March 6, 2016 at 9:52 am #

          Thanks so much for weighing in here, Larry. The reality that MedX doesn’t qualify for the PatientsIncluded badge just seems wrong, doesn’t it? If you and your team didn’t invent this kind of event, you have certainly perfected it. It seems like that “two pre-paid patients” criterion could be addressed by doing just that, selecting just two patients to be fully funded in advance (i.e. nothing to do with total number of partial ePatient Scholarships you distribute each year).
          PS. I hope you enjoyed the #hcsmca event in Vancouver last month – I arrived for the #QF16 conference next day, so didn’t get to see you again. (Both events, ironically, did get that badge!)
          warmest regards,
          C.

          Liked by 1 person

          • Andrew Spong March 7, 2016 at 10:40 pm #

            MedX would need to pre-pay patient faculty travel and expenses *as well as* pre-pay two patient scholarships in order to be able to self-accredit as a Patients Included event according to the charter requirements in the same manner that all other events that have PI self-accredited to date have done. The PI co-authors have stated on numerous occasions that MedX was the model the PI charter was based upon, and it is a source of deep regret to all concerned and confusion for everyone else that this benchmark event cannot self-accredit as PI due to internal accounting practices.

            I sincerely hope this can be overcome, and that MedX can join the movement it helped to inspire.

            Liked by 1 person

        • Lucien Engelen March 7, 2016 at 1:02 pm #

          Hi all, good discussion that puts patients in the right place, and that is why I started #PatientsIncluded in 2010 blogpost on Posters, which was terminated. The reason to me was I turned out to be speaking at a lot of conferences where everyone was involved BUT the patient.

          Larry: I think there is some kind of mix up in history, as right from the start your conference is one of the examples of #PatientsIncluded as I bragged about in many places about the great work that has been done at Medicine X. Also as per the blog still on your own website, this was the intention right from the start.

          When #PatientsIncluded evolved, a group wanted to set some clauses to identify “self certify” conferences, I lent my (Trademarked) #PatientsIncluded logo for them to use, just as I would do to every other non-commercial initiative that would encourage inclusion of patients in all health(care) processes.

          The group next invited everyone to contribute, and I remember discussions having Medicine X as an example where everyone knew this would fit. A great conference, with many many patients, however of course not having the ability to pay everything for all. Larry was invited to come over virtually and think along for possible solutions. As far as I know, he chose not to apply nor propose a change that could work. During your visit to the Netherlands, we chatted briefly about this and I again stressed there should be a way to handle this.

          I am still proud of having Dave de Bronkart as my very first speaker on one of the 5 TED-X events I set up back in 2011, but conferences are just one aspect of #PatientsIncluded-ness. Also our newest conference will have again over 40% patient speakers.

          Meanwhile, we at Radboud University Medical Center carried on with bringing #PatientsIncluded into our medical school curriculum, our innovation processes, research and even real estate processes in all steering committees have a equal voice. Soon an update will surface on the article of #PatientsIncluded in The BMJ of the article written on the Radboud UMC mission started with (former CEO) Melvin Samsom.

          Liked by 3 people

          • Carolyn Thomas March 13, 2016 at 5:04 am #

            A belated ‘thank you’ for this comment, Lucien. I especially appreciate your clarification of that invitation to Medicine X organizers to share their feedback leading up to the Patients Included charter process. There was certainly ample buzz everywhere on social media over many months inviting all interested parties (including MedX) to participate and contribute, so no excuse that some parties were somehow not sought out for their expertise. As a patient myself, I’d like to thank you specifically for all you’ve done to propel this movement into mainstream healthcare. Best of luck to you…

            Like

Trackbacks/Pingbacks

  1. Journeying Beyond Breast Cancer - March 12, 2016

    […] Have you heard of the Patients Included conference manifesto? Whether you are familiar with the concept or not, Carolyn‘s open letter to conferences which include patients on their agenda is a must-read…

    Like

  2. MEDCOMMSNEWS - March 7, 2016

    […] From Carolyn Thomas on her personal Blog – [Read more] […]

    Like

  3. Massage by Amber - March 6, 2016

    […] Source: My open letter to “Patients Included” conferences… HEART SISTERS […]

    Like

  4. Dr. Patrick Neustatter - March 6, 2016

    […] My open letter to “Patients Included” conferences […]

    Like

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 5,220 other followers

%d bloggers like this: