Inserting patient advisors

[A Former User]

Locally conferences and seminars for chronic illnesses are becoming aware of the need for a patient voice /story at conferences . This is great for there is nothing quite like the voice of the person with the illness . In September I decided to attend a chronic pain conference. As there was great attendance and the patient story I became painfully aware of what they were lacking . I as many chronic illness patients become painfully aware of the gaps in health care system . As I sat at this conference , which had great topics I could tell there was no input from patients from the planning stage . I have been doing research and see this trend . After the conference I did give feedback .

I am looking for suggestions on how and if I am entitled to approach the organizers of the local conferences to suggest a patient representative in the planning stages .

I do not want to offend anyone , just make suggestions . I am a health care provider too and until I was bounced around the healthcare system did I realize what we are lacking .

I volunteer with a non profit organization for a chronic illness I do not have and have developed many skills through the committee work and the courses I continue to take . I have much to offer and wish to influence the chronic pain community. How do we as patient advisors move forward ?

Virginia

[A Former User]

These are good questions and have had similar experiences. During the early years of my advocacy work, I also attended many conferences where patients, clients and family members have been invited to participate on panels, tell their stories etc. and when I participate, I have been frustrated many times due to the lack of respect that was given, so I chose to makes these educational opportunities. An example of the disrespect is I was often asked to be the last speaker of the panel and those who spoke before me went over their time limit and I had 1 or 2 minutes left!! My reaction to this was to say "I can't tell you about a lifetime of experience in two minutes so if you are interested, come see me after the panel." I thanked everyone and sat down. Most of the planners came to me and apologized for the time limitations and my response was to put us first and suggest that if they had a patient/family member as part of the planning committee, this would not happen. Also, many of those who attended the panel approached me to share my story and, sometime, I was surrounded by audience members. This visual had a big impact not only on me, but on the organization(s) that planned the conference.

I have often offered my services to conference planning committees with great successes (maybe too much because my services were always sought after once it was known I do this) and I have noticed a distinct difference on how conferences that have patients and family members participate in the planning. One of the key differences is the time that we need to share our experiences.

I have found that my assertiveness skill in this area (and all areas of engagement) is the best tool that I have when dealing with situations that you described. The more our services are needed, the more demands there are but also, more engagement opportunities present themselves and I now charge a nominal fee for this type of service and I don't get a lot of push back.

I hope this helps

[A Former User]

Claude, It is interesting how you were invited to participate and be given limited time . Quick thinking on your part to indicate not enough time and give participates opportunity to speak with you afterwards . This got them thinking .

You have answered my questions and I will continue to be assertive and polite at the same time and hope for some success

Thank you for your input

[A Former User]

Great example of the difference in levels of engagement! Co-Design and partnership would mean having a patient advisor involved from the beginning as an equal member of the planning committee. I agree wholeheartedly that this will change the end product for the better! Historically, the patient voice has been an afterthought "better get one of those" kind of things, but I am seeing significant changes in the past year or so with Patients Included events. We need to highlight those successes to model what it should look like!

Perhaps sharing Patients included information with the groups you are working with would be a helpful first step?

Good luck! Angela

[A Former User]

Thanks Virginia for this topic and Claude for his testament on the value of assertiveness. Angela is certainly right to suggest the Patients Included charter for conferences is a great way of offering organizers "best practice" guidance.

Here's another approach I've used that sounds fairly aggressive (highly assertive), but doesn't have to be offensive, if you've got a smile on your face --or more usually by simply using friendly language.

I composed a "cold call" email to the organizers with this general stepwise structure. Personalize it and fill in the details with lots of generous adjectives to compliment the professional group...

I've seen publicity for your interesting conference and note that it doesn't have patients involved but refers to better care for patients and families, and better value in our public healthcare system. I commend your timely topic; you need a citizen-patient in the room [or on the panel or at the podium, etc]; here's what I can offer to those attending your conference; here's how I will take what I learn from attending your conference and share it more widely. [Then the big ask] Will you waive the registration and assist with my expenses in attending? Congratulations again on your excellent programming and speakers. I feel sure I will enable your colleagues to be even more effective in accomplishing change.

Or words to that effect.

To my astonishment, it sometimes, even often, works to get me in the door. Once I'm there, I do all I an to widen the path for others and ensure everyone is comfortable and self-congratulatory about having asked me to join. And then of course, it is incumbent on me to deliver what I promise. Win-win.

If they don't go for it, you've lost nothing. Just thank them effusively for considering opening up to patients, and offer them the Patients Included charter for next time. Say thank you. You never know when you'll bump into these folks again, and I promise you they will remember your confidence and positive-ness, even if they don't welcome you the first time.

Anyone else try such a "forward" approach to attending conferences, or am I the only one who is so outrageous??

Best wishes, Carolyn

[A Former User]

That is a lovely way to get what you want Caroline. I'm glad it is so successful.

In some ways I am finding it easier to get to conferences, but am finding that the more involved I get the less time I have to try to get conferences to accept me.

I have thought of positioning my self as a 'media' person by virtue of my blog and my enjoyment of live tweeting. It's almost embarrassing to attend as a patient and to tweet almost as much as the social media group for the organizers does.

Right now I am at CADTH - the conference is called Measuring Value in Theory and the Real World and I inadvertently swamped their Twitter stream by tagging them in a March for Science post for the Ottawa March.

Turned out to be the most popular tweet I ever tweeted

Annette

[A Former User]

Good action Carolyn, goes to show what we can do if we speak up. I often come across many people who are afraid to and always encourage saying something, you never know what happens until you try.

[A Former User]

So Annette, this in-your-face approach isn't always successful. But as Claude says, if you don't try, you won't know. Or as I say to myself all the time -- ALL THE TIME -- when I feel the slightest bit discouraged...

YOU KNOW HOW IT COMES OUT IF YOU DO NOTHING!

That's been my motto over many decades of civic activism. It's even more true in healthcare where there's a very secure hierarchy, monumental inertia, public aversion to imagining ill-health, seriously big money, political mythology that health is the "no-win ministry" and human discomfort with suffering of all kinds: financially, physically and socially.

Apparently Joey Smallwood, first premier of Newfoundland, famously said, "“I never had a conversation about health care that didn’t lose me votes.” LINK Well, I've never had a convesation about health care that didn't inspire me to foment change. Truly.

So, how have you snatched victory from the jaws of defeat? How do you recharge your optimism reserve? What gives you the idea you can change the world?

[Hint: look around at the awesome fellow travellers in PAN, and feel the vibe!]

Yours in solidarity!

Warm regards,
Carolyn

[A Former User]

Claude I was one of those people who was afraid to speak up but as I move forward with the words of wisdom and encouragement here I will continue to speak up.

As Carolyn said " YOU KNOW HOW IT COMES OUT IF YOU DO NOTHING!" words to live by .

Virginia

[A Former User]

Words to live by!