Lucien Engelen: Patients not included

Toekomst v d Zorg Prof Lucien Engelen NijmegenWe all know that healthcare faces huge challenges—budget cuts, increasing demand, and a shortage of skilled personnel. To help find solutions to this, conferences are set up to discuss the changes needed.

But most of these conferences happen without the people they are all about—patients. “When people are talking about you and you’re not at the dinner table, this mostly means you’re on the menu,” someone said to me, referring to the lack of patients at healthcare conferences. At conferences about doctors one would expect to meet doctors, so why not include patients in healthcare conferences too?

In Spring 2009, I started to ask patients to stand up at the conferences I had organised and share their stories. After that, in February 2012, I launched the patients included™ act, which says:

I will ‘NO-SHOW’ at healthcare conferences that do not add patients TO or IN their programme or invite them to be IN the audience. Also I will no longer give lectures/keynotes at ‘NO-SHOW’ conferences.

Over the course of the past few months it is good to see a change occurring. More and more conference organizers have already acted and invited patients to participate in discussions or give a talk or are thinking of doing so.  For example:

  • Medicine X Stanford
  • Medicine 2.0 Harvard
  • TEDMED Washington DC
  • Doctors 2.0 Paris
  • World Parkinson’s Disease conference
  • TEDxMaastricht
  • TEDxNijmegen
  • FutureMed
  • Saskatchewan Health Quality Council Summit
  • Patients in Power 2012 Athens
  • Cleveland Clinic : personalized healthcare summit
  • Patient Safety Conference Dutch Healthcare Inspectorate (100 patients out of 600 visitors)

This is good news. However, there are still an awful lot of conference organizers out there who don’t get it.

Let’s take one example out of many: the World Health Summit 2013, due to take place in October in  Berlin.

In the announcement it reads “One thousand representatives from all health related fields: Top-level scientists, political leaders, CEOs from industry, representatives from civil society and foundations, executives from the healthcare systems, students and young professionals.”  And their vision and goals start with: “Bring together all stakeholders on an equal level.”

But something or rather someone is missing here—what about patients?  They’re not in the programme or on the advisory board.

I salute them for organising great conferences on healthcare multiple times a year all around the world. But even in the welcoming address the word “patient” isn’t mentioned. When I asked why, I was told to get in touch about possible ideas for future years. Great, but that was the response last year as well… so I would be most willing to help them make a real statement next year and a first step this October.

It is not only important to make sure that patients are invited to conferences, but also that they are able to participate. It is bizarre to see that some organizers think that inviting a patient along is a checkmark or an asset you can “order.” At the REshape & Innovation Center of the Radboud University Nijmegen Medical Center, we have even had organizers call us to see if we could provide “something like a patient” for them. For that reason we trademarked our logo, just to be sure that it is only used as intended.  It’s free to use for every conference.

It is clear that there is not a “one size fits all” for this, and maybe we should include different levels of self-certification. At one point e-Patient Dave sent me a tweet saying : “How about a 5-star rating for your Patients Included™ Act ?” This seems like a logical next step. We started to write about what the different levels should or could be. Should it be from 1 to 5, or should it include negative ones like minus 1 star? I think it has to be a simple, understandable, recognizable format, so we sticked to the 5 star format.

But in thinking about what each star should stand for, it suddenly struck me that we were almost stepping into the same old pitfall of filling in the blanks for those of you out there. So that’s why I need your help. And why I would like to ask: patients and healthcare professionals. Would something like that be helpful?

Lucien Engelen, (@lucienengelen on twitter) is director of REshape & Innovation Center of the Radboud University Nijmegen Medical Center, the Netherlands. Faculty FutureMed at the Singularity University, Silicon Valley USA.

No conflicts of interest.

  • lucienengelen

    So true Tessa ! People have stopped listening, they hear but not listen.

    4 years ago i there for appointed a Chief Listening Officer into my REshape team Corine Jansen (@corinejansen on Twitter. More on that in my talk.

    Since, her works has taken off, in our Radboud University Medical Center, outside for other HC institutions. Recently she addressed the International Listening Association in Montreal. For out REshape Academy a Masterclass Listening in Healthcare was designed that we might run in English next year, if there would be intetest in that.
    Just like on conferences ( listening to the ones that are experts in háving the disease the most valuable resource for needed change.
    Best @lucienengelen

  • kgapo

    I think that Lucien has clearly stated in his initial post what Patients Included means: patients on the floor and in the audience. In Athens at the Patients in Power in Nov. 2012 and in the forthcoming second venue on Nov. 8-9, we have taken it a step further: patients in the conference design, planning and organization.
    The change will not come only from the conference organisers side, accepting to include patients but also from the patients side, not accepting decorative roles in conferences. That means conferences where only one or two patients are invited as speakers with no invited, and facilitated to participate, patients in the audience.

  • Sara Riggare

    Thank you Lucien for a great post! As you know, this is an area very close to my heart and I have given it a lot of thought. I have also had a great number of interesting, inspiring and constructive discussions with my ‘partner in crime’, the amazing Cristin Lind, and I will be forever grateful to e-patient Dave for introducing Cristin and me to eachother. Cristin has brought her extensive experience in patient advocacy to Sweden and has (among other things) introduced me to quite a few interesting models and ways of thinking. A few are briefly described below.

    The ‘to-for-with’ model: going from doing things TO the patient, over doing things FOR the patient, to finally doing things WITH the patient.

    WHEN in the process are patients involved? Are they invited to take active part already from the PLANNING of the project or similar and all through the DESIGN, over IMPLEMENTATION and to EVALUATION? Or are they invited at one of the latter stages?

    And of course, the obviously evident: fraction of patient compared to the total number involved. And I am not necessarily claiming that the more patients, the better. It has to be the appropriate number of patients and with the right competences for the task at hand.

  • Binding&Hoche

    What a briliant idea….they won’t like it though…

  • World Health Summit saw fit to respond to my observations regarding the absence of patients on their agenda with sarcasm, which I didn’t feel boded well for the future. In view of the fact that they have prime ministers as keynote speakers and heavyweight figures from national health systems on their faculty, the possibility that policy makers and signatories could be allowed to go another 12 months without being made to confront the shared decision making agenda is unacceptable, in my opinion.

  • lorraineCleaver

    Helpful to all, and high time it became standard. Thank you for writing this. I mean that sincerely, a patient losing patience.

  • kgapo

    The 2nd Patients in Power Conference is this year too a proud member of the Patients Included medical and healthcare conferences movement.

  • eli pollard

    I am honored to see the World Parkinson Congress listed among this list of prestigious meetings.

    The First World Parkinson Congress was held in 2006 and had approximately 34% of the delegate body representing people with Parkinson’s (PwP) and caregivers/ care partners. It’s evolved from there as the PwP community is now represented on on every single planning committee, as well as on the Board of directors and most importantly, perhaps, as faculty members throughout the program. This was evident in the most recent WPC 2013 in October where 38% of the delegates were PwPs and caregivers/ partners.

    Interestingly, when I first started with the WPC, I had no idea how unusual it was to include patients in a meeting. I was told it was the mission of the organization, and that we just needed to make it happen. Looking around, I now understand that not only “making it happen” was an unusual task, but the mission itself of the organization was incredibly forward thinking.

    I’m honored to serve the Parkinson’s community in this way. Thanks, Lucien for pushing the envelope and raising the bar.

    Elizabeth Pollard
    WPC Executive Director

  • Carian van der Sman

    Hi Lucien,
    That starsystem would most certainly be helpfull. Great idea.
    I would suggest to implement it for projects too. There where innovation or change takes place, the “endusers” are most often not involved.
    Thx for your vision!

  • amcunningham

    Hello Lucien,
    I’m picking this up again because it seems that more than one UK health conference is closed to patients because of pharma sponsorship. Is this true across the EU? What impact does this have on patients included?

  • How about giving funding to patients to create mHealth projects in collaboration with academics/medics? We’re shut out from the funding sources.

  • Can someone point me to the rules regarding pharma sponsorship and patients?

  • * patients allowed in
    ** patients allowed to speak
    *** patients consulted on research/development/knowledge
    ****patients rewarded to consult on research/development/knowledge
    ***** stream of funding for patients to create new projects supported by medical experts
    ****** funding system open to patients as equal participants in research and development

  • speaking as someone who is *both* a patient and a tech/researcher/postdoc