Open Letter to Patients Included Organizers

By Laura Kolaczkowski posted 07-01-2017 11:11 AM

  

I am friends with the author of this blog, Carolyn Thomas, and with her permission I am copying it in its entirety here  but I encourage you to share the link to her post with the people who make decisions on including patients in conferences.   https://myheartsisters.org/2016/03/06/my-open-letter-to-patients-included-conferences/

You will also have to go to her site to get the original formatting and possibly to follow the many links she has included.  

best, Laura


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 your interest in the  increasingly important “Patients Included” movement sweeping through medical conferences. By the way, here are the five qualifications your event requires in order to meet those Patients Included criteria.

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 well-located, 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: APatient 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, bloggerspeakerand (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.

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 lives with 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 some 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 Includedaccreditation 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.
 

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

See also:

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