Patients Included is a Trademark of the REshape & Innovation Center

Patients Included: proceedings of a meeting held on 11 March 2015

UPDATE: Patients Included, a charter for conferences was published online here on 1 May 2015 at 2pm UK time.

Kristi Durazo, Valentina Jaramillo, Tessa Richards, Sara Riggare, Andrew Spong, Paul Wicks, and Colleen Young participated in the inaugural Patients Included Global Patients’ Charter discussion, which was held as a Google Hangout on 11 March 2015 at 6pm UK time.

Core information about the charter can be read here.

Clauses submitted to the charter to date can be read here

General group observations made by participants regarding the charter

1. A charter of five clauses was considered to be sufficient to take the charter to publication.

2. It will be mandatory for all five clause requirements to be met in order for a conference to be deemed compliant.

3. A tiered (i.e. gold, silver, and bronze) system of classification awarded to conferences was considered too complicated to go to launch with. The group felt it to be important that the charter be achievable so as not to dissuade potential adopters from undertaking the adaptations necessary to be in compliance. The group also felt that in possible future iterations of the charter, conferences incorporating additional benefits for patients could be recognised in a supplemental manner by means of a commendation, or something similar. For now, the group felt that it simply wanted as many conference organisers as possible to acknowledge and comply with the Patients Included Global Patients’ Charter.

4. Compliant conferences should be able to self-validate in order to become Patients Included accredited, and thereby be entitled to display the Patients Included REshape & Innovations Center trademarked logo, and link to the charter. It was agreed that it would be self-evident should conferences claim accreditation yet fail to meet all five of the necessary criteria due to their public nature. It was also considered unlikely that non-compliant conferences would use the Patients Included logo on the basis that the ensuing critcism they may attract as a consequence could compromise the event’s viability due to Patients Included advocates’ lobbying, petitioning speakers to withdraw, and so on.

5. It was proposed that all signatories of the charter (which will be signable online post-publication, as well as pre-publication) be able to show their support for the initiative by posting a graphic with a message to that effect which will be downloadable from patientsincluded.org subsequent to the publication of the charter, provisionally scheduled for 1 May 2015.

6. In order to move the charter forward, it was proposed that the clauses cited below be circulated as version 0.5 for discussion and feedback among contributors and other interested parties. Ratified by the end of March 2015, a Creative Commons-licensed version 1.0 of the document will become the Patients Included Global Patients’ Charter on 1 May 2015 until such time as it is reviewed, and possibly revised. A two year review and revision cycle was proposed, beginning in 2017.

Clauses that are currently being considered for inclusion in the Patients Included Global Patients’ Charter

The participants proposed that the five clauses cited below be considered essential in order to meet the charter’s objectives, namely to ensure that patients are neither excluded, nor exploited by conferences.

These clauses are presented as a version 0.5 of the charter for discussion as described above.

Clause 1: The conference (defined as an event held by a commercial entity, provider, society, association, or organisation) offers patient scholarships covering travel and accommodation in full, in advance.

Commentary: the number of scholarships and the geographical location of applicants is not stated in order to simplify the compliance criterion, but the use of the plural form indicates that at least two scholarships are required to be offered per event.

Clause 2: The conference covers the travel and accommodation expenses in advance of all invited patient faculty, be they participating in the advertised programme as speakers, moderators, or in any other capacity.

Commentary: the language makes an additional stipend to compensate the patient participants for their time optional rather than mandatory.

Clause 3: The conference ensures that patient faculty are involved in every element of the scheduled proceedings, satellite meetings, or allied events which feature any aspect of patient experience or interaction as their subject.

Commentary: a broad definition which those wishing to exceed the charter’s requirements would make certain covered pre-event planning too, for example.

Clause 4: The conference is streamed live online with no registration required, at no cost to participants, with questions and comments from patients being both solicited and incorporated into the proceedings in order to facilitate full participation from those not attending in person.

Clause 5: The conference will alight upon, pre-advertise, and actively promote an appropriate official conference hashtag that is not in use for other purposes.

All comments welcome.

20 thoughts on “Patients Included: proceedings of a meeting held on 11 March 2015

  1. Andrew, thanks for taking the minutes and formalizing the proposed clauses, this is great to see and the meeting has triggered a number of fruitful conversations!

    I’d like to propose that we ensure the first clauses are reflective of Lucien’s original “no show” post so that they strongly punch out the intent and provide fairly chunky aspirations.

    There are accounting reasons why it would be very challenging for every conference to pay expenses in advance, however we could certainly recommend it as a “best practice” that the organizers arrange and pay for the travel in advance while acknowledging this is not always possible.

    e.g.

    1.) The organizing committee includes, as full voting members, patients (or caregivers) with experience of issues relevant to the themes of the conference

    2.) The speaking programme features patients (or caregivers) with experience of the relevant issues as presenters and covers their travel and accommodation expenses in full

    3.) The audience includes patients (or caregivers) affected by the relevant issues selected to attend as “e-patient scholars”, with attendance, travel, and accommodation expenses covered in full

    4.) Physical accessibility for all is ensured by meeting all local relevant disability & access requirements and provide wheelchair access, sensory guides, loop systems, video captioning

    5.) Virtual accessibility for all is ensured by use of free social media not requiring registration such as live streaming video, archive video of talks shared online, twitter hashtags, and inviting questions and comments from social media

    Hope those are helpful suggestions and welcome more discussion!

    Best wishes

    Paul

    • Hi Paul. As promised, further comments on your reflections.

      Personally, I think there are good reasons to leave the ‘payment in advance’ requirement in the charter. Over the years, I’ve seen dozens — as I’m sure you have — of observations in facebook feeds and elsewhere indicating that patient participants have had to pursue conference organisers for payment for their travel and expenses long after invoices they have submitted have become due.

      That’s not acceptable, and as the charter is intended to protect patients, it would seem rather unfortunate if a conference could withhold reimbursement for months after the event, and still be deemed to have complied with the charter’s requirements!

      Patients aren’t businesses, and I don’t see why individuals should be expected to extend what is effectively a line of credit to conferences that charge thousands of pounds, euros, or dollars to hundreds or thousands of delegate. Dave deBronkart and Casey Quinlan among numerous others have written extensively about this.

      The purpose of the charter as conceived is, after all, to ensure patients are neither excluded, nor exploited. If this is going to be a deal-breaker for conferences that can’t meet this requirement, I’m not sure anyone should care overly.

      If conferences wish to counter the suspicion that they are including patient agendas as anything other than a means of drawing people into their events for their own financial gain, there has to be demonstrable authenticity in the conference organisers’ commitment to treat patients ethically if they’re to be deemed credible. The payment of patient faculty in advance could be perceived as going a considerable way towards proving this.

      So for me at least, the ‘payment in advance’ principle must stand.

      Re. the clauses:

      1. I think this is an appropriate clause to lead with, dealing as it does with matters of conference design
      2. An expanded version of the former clause 1, with the valuable addition of requiring patient or carer participants of relevance.
      3. Let’s future-proof the charter by calling scholarships ‘scholarships’. The ‘e-patient’ label’s moment has passed, IMO. No offence, Dave😉
      4. We’ve made the requirements of this clause specific by including examples. Should we? Would a conference have to meet all of them in order to meet the charter’s requirements? Further discussion required here. If we are going to offer examples (the ‘such as’ language currently implies that not all of the items cited need be provided), then we need to make the list as extensive as possible. Has anyone got/seen such a list?
      5. Tweaked the archival element as it stood out as being something that reflected on the event historically in the midst of a list of conditions pertaining to its delivery in real time. Needs further work, perhaps.

      See http://bit.ly/1wU5HDd

  2. Thank you Andrew for taking the initiative to the meeting yesterday, I REALLY enjoyed it! I want to point out though that the meeting was held on 11th March🙂.

    I am in favour of Paul’s suggested edits to the clauses and suggest clarifying even more by adding a “header”/”title”, see below:

    1.) Conference planning: The organizing committee includes, as full voting members, patients (or caregivers) with experience of issues relevant to the themes of the conference
    2.) Conference programme: The speaking programme features patients (or caregivers) with experience of the relevant issues as presenters and covers their travel and accommodation expenses in full
    3.) Attending the conference: The audience includes patients (or caregivers) affected by the relevant issues selected to attend as “e-patient scholars”, with attendance, travel, and accommodation expenses covered in full
    4.) Physical accessibility for all is ensured by meeting all local relevant disability & access requirements and provide wheelchair access, sensory guides, loop systems, video captioning
    5.) Virtual accessibility for all is ensured by use of free social media not requiring registration such as live streaming video, archive video of talks shared online, twitter hashtags, and inviting questions and comments from social media

    Best wishes,
    Sara

  3. Thanks for rounding this up Andrew. I really like refinements that Paul made and how Sara framed them in planning, programming and attendance. Could physical and virtual accessibility be folded into one thereby allowing a 5th clause that encompasses dissemination-evaluation? I would like to see patients and caregivers involved in disseminating the learnings from said conferences, building the products resulting from conferences (videos, papers, future research, blog posts, etc.) and they should also be invited to participate in the evaluation and improvement cycle.
    Colleen

    • Hi Colleen. Thanks for this. I will incorporate all suggestions tomorrow and update the post for review and wider circulation among those following the #patientsincluded hashtag, and beyond.

    • Hi Colleen.

      That would be marvellous, I agree, but personally I think that there is a significant increase in the level of difficulty in terms of conferences being able to achieve this fifth clause compared to the others. Also, I’m not sure it’s possible to be said to have complied with the terms of the charter before the conference takes place on the basis that this requirement refers to actions that will take place after the conference concludes. Hence the PI accreditation would be being conferred after the event has finished, which would diminish the likelihood of its being perceived as an attractive goal to conference organisers. There’s also the question of how exactly this would be self-validated, the possible need for review, etc. I think it is similar to the ‘tiered’ idea, i.e. potentially attractive in the abstract, but too difficult to implement in reality.

      I’d therefore suggest we pass on this at this time, but we could certainly consider it as one of the criteria to be met for ‘overachieving’ Patients Included conferences who may have a special commendation bestowed upon them, although by whom, and on what basis etc. is another layer of complexity we can’t really address at this point.

      Would you agree?

      • Agree on all accounts! It would be counterproductive to have the PI accreditation granted post event and goes against one of the key guiding principles of simplicity.

        In involving patients and caregivers in the planning and participating in conference, one would hope that conference organizers would also recognize the value of patient/caregiver contributions in dissemination and quality improvement after the event, and would highlight these as success factors.

  4. Thanks Andrew, Paul, Sara and Colleen! Its good to see the Patients Included Charter comming together. This has made me wonder how come there are still people planning health conferences without patients. #patientsincluded has to be the normal and not the exception and I think the clauses are shaping the future to that. I hope to be of help and I definitively want to see this occuring in Latinamerica.

  5. This is a great initiative and the proposed charter points are looking good. I have only a few points.

    1.Do you think there is a case for extending the remit of Patients Included beyond “Conferences” There are many medical meetings in hospitals, practices, CCGs and other fora which don’t get billed as conferences but where patient participation is arguably even more important. So could the clause be health and medical conferences and meetings ?

    2. Absolutely agree patients and carers on steering committee’s is essential but does there need to be mention of a minimum number?

    3. Nowhere is there any guide here on “which patients” to include . There is endless debate on the merit of “representative” patients v experienced patient leaders .

    4. I think it would be great to get input from/include Lucien Engelen on this. I also have another members of the BMJs patient panel who are and would be keen to be involved with this initiative. Are you happy for me to share with them?

    • Hi Tessa. Thanks for your continuing support and interest. To speak to your observations in order:

      1. The original clause covering this contained the language ‘the conference, defined as a [meeting or] event held by a commercial entity, provider, society, association, or organisation’. This has been reinstated to incorporate your suggestion.
      2. No, there isn’t. As discussed, the use of the plural form connotes ‘more than one’, but during the 11 March chat we observed that adding a specific number or percentage would be a barrier to achieving the charter’s requirements — and we want Patients Included to be as widely adopted as possible, whilst serving its primary purpose: to prevent the exclusion and exploitation of patients and carers.
      3. True, and I absolutely agree with your observation. However, this is the sort of discussion that needs to be played out *within* events such as the ones we are envisaging rather than us attempting to define what a ‘representative patient’ or ‘patient opinion leader’ is, I think. It’s not really for us to harness the charter to a particular definition which is likely to date very quickly, but rather create the conditions of possibility wherein the discussion can take place, yes?
      4. Lucien has been cc.d to all updates, and has kindly commented and RTd communications published to date. And yes, by all means circulate to everyone and anyone you think needs to see this. In order to ensure that we’re all reading the same materials, please point them here:

      Thank you!

  6. Didn’t even know this was underway, and I *love* that it’s already so far along the road. I have nothing to add that hasn’t already been covered in the comments above, but I’ll add my voice to the following:

    – I agree that e-patient is somewhat played as a term of art. I’m almost at the point of disliking the word “patient” at all, but I recognize the need for its use in this context.
    – Vis a vis the “patient opinion leader” and “representative patient” question, I would hope that the goal would be to include both at any/all conferences under this charter. Those of us who’ve been there, done that, have the t-shirt/knife scars/PTSD/system savvy have our uses, as do the folks on the ground dealing with [condition/issue under discussion at the conference]. If patient leaders are the only ones visible, patient voices will continue to be seen as magical unicorns, not the average Joe/Janes that need to see their issues on the agenda. Even though we are, at root, still Joes/Janes. Leading by example, with new voices in the room, will make this a movement vs. a cocktail party.

    • Oh, and to answer the question you actually asked on Twitter – yes, I think payment in advance needs to be in the charter. Negotiation over individual scholarships at specific conferences can be negotiated, but I think at minimum travel (air/rail/motor) and hotel accommodations need to be booked/paid for the scholarship recipient by the conference organizers BEFORE the conference.

    • Thanks for taking the time, Casey.

      Re. your important point concerning ‘POLs’ and ‘representative patients’ — yes, totally agree. However, I’d just reiterate the point I made in reply to Tessa above, namely: this is the sort of discussion that needs to be played out *within* events such as the ones the charter will hopefully safeguard the presence of both classes of delegate participating in, rather than the charter attempting to define what a ‘representative patient’ or ‘patient opinion leader’.

      Also, re. ‘e-patient’ as a signifier: we’re on a (proposed) two year revision cycle for the charter, and I suspect ‘e-patient’ will look as redundant in 2017 as ‘digital health’ does today. I also agree with your intervention regarding the long-standing discussion of the false dichotomy between ‘person’ and ‘patient’, and it would be great if we could abbreviate ‘patients scholarships’ to just ‘scholarships’ in the charter. However, we have to be explicit about the fact that its patients (however defined) whom the charter expects conferences to be offering scholarships to, not just anyone.

      • Agree re the necessity for each event to find its own leader/representative-patient gestalt. Just thought I’d chime in on the which/what, since it’s an ongoing conversation in my own circles. And the wrangle over epatient/patient/consumer(LEAST fave option)/person, it is indeed important to make the “patient” distinction clear in the scholarship zone, otherwise we’ll see another iteration of Health Datapalooza’s “Consumer Circle,” which is heavy with app developers of consumer-facing shiny objectivia vice actual humans with experience within the walls of the medical-industrial complex.

  7. Dear Andrew, dear colleagues,
    I have first commented on the excel of the charter and read afterwards this post and I am glad to see that all agree on the key elements of the charter. I would like to note that I entered as a no. 6. on the charter the conference conclusions.
    Patients and patient advocates attend medical and other conferences in a context, that is to learn and use the information acquired in their advocacy or to strengthen their arguments. Therefore, patients attending conferences need to be able to use the conf. materials such as presos., live streaming on demand, photos, twitter TLs, etc. and conference organizers should made the conference abstracts and other materials easily accessible (and not under paywalls!!) to all participants. Colleen Young joins me in this idea, but she did not propose a separate clause for Conference Conclusions.
    Tessa Richards rightly mentions that there several other medical conferences organized by non commercial organizers and I have mentioned as such conf. those organized by Health and other Ministries, Hospitals, Research Institutions, EU entities, etc. Special mention goes to the EU Commission for making it a rule to invite patients and civil society to participate in many of the events they organize.
    I have noted that in the charter a participation of two patients is considered sufficient for a PI nomination, but I frankly cannot agree to that. Having two patient speakers e.g. in 20 other speakers, and offering two or even five scolarships in conferences of e.g. 200-400 participants, is not a proof of patients inclusion but an alibi… Moreover, we do all know that keynote speakers receive honoraria, but I have not heard of patient speakers receiving anything more than travel/accomodation expenses on a de minimis basis… If we talk about treating patients equally in medical conferences this should reflect in all aspects of the conf. organization..
    Many thanks to all those who have contributed to the development of the Charter and special thanks to Andrew for putting it all together
    Kathi Apostolidis (@kgapo)

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