Patient and Family Sponsorships

[Angela Morin]

Hi everyone,

On March 28th, I hosted a twitter chat in my role as the Patient Partner at the Canadian Foundation for Healthcare Improvement on the topic of Patient Sponsorships, #savingaseat4patients. We had a great chat and so appreciated all that participated. We learned a lot, including, 2 hours is probably too long for a twitter chat and creating a GIF should not be done mid-chat when you have no idea what you are doing!

The discussion was not about whether patients SHOULD be included in conferences so much as whether patients and families saw value in an organization, in particular CFHI, inviting a patient to join them at conferences that they are attending as sponsors. The events that we were focused on for this chat are not ones that CFHI is hosting/planning but that CFHI is attending.

The questions were rather specific, not so much theoretical but something that could inform a decision as to whether this is something CFHI should do, what we need to be thinking about and how we might move forward WITH patients. The idea, which was informed by the #hownottodopatientengagement twitter tag, is that it would be a partnership between the organization and patient partners to reinforce the importance of the presence of patients and families at conferences, to provide opportunities for patients to attend conferences they may not otherwise be able to attend, to help build capacity and to hopefully develop ongoing relationships and future partnerships.

It occurs to me, however, that not all of the members of PAN are on twitter so I thought I would share the questions here in case anyone would like to contribute to the discussion! We are gathering the information, will share it back out and will use it to guide our next steps. We will be sharing the tweets in a more organized fashion in the next few days and will be adding in additional comments and learnings that come from beyond twitter in a future summary.

These were the core questions that sparked the conversation . I look forward to reading your perspective and thanks so much for engaging in the conversation!! Please refer to the Q number if possible when answering.

Q1: Do you see value in us providing scholarships for #patients to attend events we sponsor?

Q2: Related question: Do you prefer sponsorship? Or scholarship? Is there a difference from your perspective? Is there a more appropriate term?

Q3: What would be the key characteristics of a fair process in choosing scholarships (or whatever it ends up being called) recipients?

Q4: In the spirit of partnership, what are thoughts on how you would like to close the loop post-conference? (w/ org who provided scholarship, w/other patients, etc.)? We are hoping to build ongoing relationships.

I will be sure to return to this conversation thread to share links to upcoming summaries.

Thanks, Angela

[Laurie Proulx]

Although I'm on Twitter, the tweetchat was during my regular work hours so I was unable to attend. Thanks so much for reaching out!

I see some significant value in providing scholarships especially for patients who aren't necessarily affiliated with a patient or health charity group that can pay for them to go. I see the funded patients as being able to write a report about their experience and sharing with the patient community. I honestly had no idea how CFHI engages patients but forums like PAN could provide a nice venue for doing this.

Accessing scholarships is a big issue. I have personally applied for a lot of things, e.g. HQO committees, conferences like HealthEVoices, and I have to say I'm very discouraged. I have been 'rejected' so many times in the last year and I honestly don't have the energy to apply anymore. It seems to me that there are so many patients who are interested and just not enough spots. I carefully select what conferences or committees I apply to because (1) I have a full-time job (4 days of week) and have to use vacation days, (2) I have 2 young kids and going to a conference means more work for my husband and (3) I am ill with a serious, life threatening illness and need to pace myself (I have rheumatoid arthritis and have airway issues that can flare without notice) So with these words, I think it's important to transparent about what the criteria is, perhaps identify who has been selected and provide advice for people on how to better structure their applications. Or better yet, support conference providers to live stream events so it's more accessible to people wherever they are, and be sure they really want to engage patients in their processes and aren't sending a couple of patients to get the "Patients Included" designation.

With this, I sign off as I've probably rambled on far too much. Thanks for the opportunity to provide feedback!

[Laurie Proulx]

At one time, The Arthritis Society used to offer scholarships of up to $1500 to support patients going to a conference where they would present. Also, might it be better to provide financial support to patients directly - instead of the organizations - and get a report on how the patient voice was embedded in the conference, how welcome they felt, etc. Just a thought or two...

Sent via Groupsite Mobile.

[Carolyn Canfield]

Laurie, your are so right that there just aren't enough subsidized places made available for patients at conferences. The sponsors always want to be acknowledged for their generosity for 1 or 2 or 12 or 20 spaces among many hundreds of professionals. To my mind sponsorship levels always sound so token at 1% or 10% or more.

Rather, shouldn't patient presence be a reflection of who wants to attend to learn and network? There is so much demand to contribute more and more to healthcare as a volunteer advisor and partner, you'd think the providers and researchers would understand that attending conferences builds capacity. Attending a healthcare conference is not a perk to someone who isn't committed already to contributing.

I think there is much room for patients to do their own thing, prepare an abstract for a short or longer presentation, create a poster about their ideas and experiences, suggest a panel of people who've agreed in advance. Conference categories for abstracts leave lots of room for patient voice perspectives! If the organizers choose our abstract, then we have a voice to influence leaders.

However, there has to be a subsidy for such patents to get in the conference door! It could be "merit-based" as indicated through acceptance by the abstract jury. I'm in a very frustrating situation now with an abstract accepted at a prestigious national conference requiring $1000+ to attend. Hardly welcoming patients! And the organizers have the gall to call this a fair compromise!!

If we wait for provider or "patient-representative" organizations to sponsor us, we lose opportunities to speak with our own independent voices. We need an equal chance to pick the topics we'd like to present, as well as choose the point of view. It is not enough to wait to be called onto a "#Patients Included" organizing committee to influence the conference themes, keynote speakers and program content. Usually that would be one or two "patient partners" among 20 or more professionals.

When I first took on this work 8 years ago, I would write to conference organizers to ask for free entry (waived registration). I would say: here is what I'll contribute as a patient and here is what I'll take away as learning to share with others. I'd also urge that the conference needed to include patients in the mix.

When I couldn't talk away the cost barrier entirely, I would approach several providers or agencies who knew me and my commitment, to ask if they'd each give me a few hundred dollars to help attend the conference. In return, I would give a talk to their staff about what I'd learned. A couple hundred dollars times 2 or 3 would meet my out-of-pocket needs.

That actually worked quite a few times to cover both travel and registration. I was totally open about what I was doing. My big argument then and now is to put dollar value where all that palaver about "valued contribution" is touted so carelessly now. It's tiresome to be told the patient voice is valued and face insurmountable pay barriers.

The alternative is that you get whoever industry, pharma and academe will underwrite, and that's all. No matter how hard you try, at some level it really is true that "you dance with the one that brung ya" in the minds of others, if not in fact.

Thanks for your contribution here --and in the world!! Best wishes.

Cheers, Carolyn

[Angela Morin]

Thanks so much for these great insights! I really like the livestream idea from an accessibility standpoint.

Totally agree about opening up the door to more patient participation in conferences. Interesting idea of potentially having access to a pool of money for patients who have abstracts accepted by conferences.

Strikes me that this is going to require a strategic, multi-pronged, multi-organizational approach to get to a point where patients actually feel like they are truly included.

I will include your responses in our summary work along with what we heard on the twitter thread. We are clearly hearing a strong need for more patient voices at conferences. We would like to partner with patients in planning a process to take a step in that direction with the knowledge that it is just one step by one organization...maybe our small ripple can turn into a wave!!

Thanks again for your very valued input! Angela