I had a thought recently, while speaking at a pediatric conference here in Toronto. I looked around at the attendees–chatting, sharing notes, comparing stories and anecdotes, listening to presenters delivering the latest research and case studies. Why, I thought, do parents and patients not do this? Or rather, why do we do this only online? Where are our conferences?
I reflected on what opportunities I had ever been given by an institution to connect with families where I would be invited to openly share and compare details of our circumstances, diagnoses, conditions, home life–with the goal of soliciting opinions, ideas, creative solutions from other patients or parents. The answer? Never. Instead, I was aware of various support groups for emotional sharing, or groups formed by administrators/social workers/family resource staff to deliver how-to information sessions (or, as I experienced once, to deliver propaganda on a particular surgery. I’m looking at you, cochlear implant.)
Truth is, institutions discourage this (sharing amongst families). I attended a symposium last month – it was about how hospitals should respond to contentious cases that go viral through social media. The discussion was a good start but a bit depressing. Social media is so clearly misunderstood by those who don’t participate. And there seemed to be a conflation of the term ‘media’ and ‘social media’, as though there was some kind of agency called “The Press” who was managing all those tweets (?!).
Anyway, the most surprising statement of the afternoon was this, spoken by a well-intentioned but flustered administrator: “We as institutions need to look at what we are doing wrong if families are turning to each other online and sharing their stories. Obviously it means we are not doing our jobs right.” Laughable, yes? I almost fell out of my chair. In this statement, the desire to own and control all aspects of a patient’s medical experience came through loud and clear.
Let me run with this idea a minute. Imagine this:
Parents gather once a month in the Sick Kids Hollywood theater, or in Holland Bloorview’s auditorium. Maybe cap it at 100. Whoever wants to present their case to the group for feedback puts their ‘problem’ up on a whiteboard. Then, the group votes on which ones get airtime. You get 15 minutes (or whatever) to present your problems – kid not sleeping, can’t decide whether or not to get a g-tube, surgery is recommended but you’re not sure, medications aren’t working etc etc. With light moderation, the audience responds – with ideas, things to consider, sharing their own anecdotes, recommended ways to deal with the child, suggestions for how to negotiate with the doctor… Maybe a physician or two is in attendance, as a resource.
(I can hear the whole patient privacy argument rearing its head – I will say just two things: I don’t have it all figured out, AND I think it’s the institutions most worried about patient privacy, not parents who are willingly sharing information.)
What do you think? An idea worth exploring?
Definetly worth exploring Jen!!! I for one know all the confidentiality protocols, but, your right, many people are willing to share their stories. This not only may get someone more information or give some it to someone else, it also helps a parent feel less alone. As you know I am not a parent, but have spent a lot of time with parents, of different cultures, personalities, creeds and understandings. I have shared with them and they have shared with me and then I become the travelling information head. I am not being cocky, I don’t know it all, but the information that has gone back and forth, to and fro in our small disabled community, always astounds me. I think institutions are doing their job to their ability, things like privacy always come up, but letting a parent know they are not alone is a totally different thing. I know there are disscussion groups and grieving parents, but, you know what goes on there “well, I heard that if you” and “you should try this, it worked…” That’s right information sharing!
Thanks for the feedback Marjorie! Somehow I knew you’d approve :) We all share anyway – and just imagine how much an institution would learn if they supported it and contributed to the dialogue.
That is a really excellent idea! And yes, it does already happen in an informal way at support groups, or on hospital wards, but information and support could happen much more effectively in the way you described. Personally, privacy concerns are lower on my priority list than trying to make things better for my son.
What a great idea….but i wouldn’t put it in a institution of health. Instead how about a movie theatre or a library conference/auditorium. That way you can lessen the feeling of institution and increase the feeling of community. Really it is community, togetherness and support by families that are living it, have lived it or may be in the throws of it. As per the privacy issue….send out a request for issues online and pic the most popular. Then discuss the most popular with a time to connect/network in the middle.
It is so needed. Marsha Dunn Klein, an Occupational Therapist has done this one time in Toronto the day before she ran a course for OTs/SLP. It was for parents and she provided the moderation. I still have families talking about the connections they made that day 5 years ago.
Another good idea, Jennifer. Having worked in a hospital for fifteen years, where we had weekly round tables with parents sharing their thoughts about their children and our patients we also dealt with the whole confidentiality issue. It really isn’t one. People sign a waiver and a promise that what is discussed stays with the group and while it was difficult, we would encourage parents to not use the child’s name.
Many parents, who often were under great emotional stress and physically burned out, found that this to be a very important part of their child’s admission to hospital.
There were also groups for those whose children had graduated from the program and many friendships made.
The patient confidentiality thing is really funny to me. When we were in critical care for those many days, the “regulars”..parents who almost lived at the PCCU, always told each other everything. We knew every detail of our kids’ lives. It was always wonderful to be together. Doctors and nurses were insane about keeping things “secret”, er, I mean confidential. I can’t tell you, Jen, how many parents were astounded to discover, when they heard it from another parent’s lips, that the doctors weren’t god, could be questioned, and that procedures, policies, attitudes, could all be refused…and alternatives put in place. Parents feel powerless in medical institutions….that’s how the institutions like it. When we get together and compare notes, suddenly, glaring issues appear…and we can call the system on it…they hate that, hate it. I puts cold molasses in their nicely oiled machine of patient/parent compliance. So…your idea…awesome. Call me if I can ever be of any help.
Thanks everyone for your comments! Just to clarify a couple of things (because of email and twitter conversations…):
I don’t suggest this as replacement to medical care or advice – rather, an adjunct or complement.
And, I know many support groups provide lots of opportunity for sharing – instead, I’m suggesting this as a forum for feedback and ideas based on management of symptoms and approaches to care. Diagnoses are like vertical silos, but many people dealing with complex care issues know there is much overlap between conditions. How one person deals with g-tube site infections, for example, could be useful to another. I mean this is as real case study, analysis and feedback, not only support and sharing.
I prefer the idea of an institution supporting the initiative as it demonstrates support of patients and parents as partners… although I appreciate Cathy’s point about community.
I LOVE this idea! Some institutions might shy away from it, however if they can see the benefit and there is no liability to them it could go over very well! Parents talk regardless how ‘secret’ things are tried to be kept. I’ve learned more from parents that have walked my walk than I have from the doctors regarding managing stress, pumping solely for my NICU kid and how to increase milk production,depression, potetial side effects from medicines that aren’t listed or told, building support systems, factors to consider regarding surgeries, etc.
Jenn, if you seriously consider pursueing this I would love the opportunity to work with you.
-Naomi
@Naomi – thank you! You might be interested to read my follow-up post, which I was writing when your comment came in :) Please stay in the loop and perhaps we will indeed work together…
I read your reply and I can see where your friend is coming from. It may be worth talking to those institutions which are leaders in patient family centered care. Often times if you can get the patient advisors on board they can impact the direction selected by administrators. And if institutions aren’t willing to be a part hosting the event at a library, town hall or church with various invited practioners to act as a resource may be a possibility. I will definitely stay in the loop.
I don’t know why I jumped on board so late in the game, but I’m in! I already have a case to present, actually!
Great idea. I agree about the confidentiality thing. Just showing up implies consent. You are there to share.