Why is asking for help so hard? Many of us don’t want to appear foolish or look like we actually need help. Maybe we don’t want to make
ourselves appear vulnerable for rejection. Asking for help means putting
ourselves in a position of weakness, and for those who have always been calling
the shots, this can be hard. For those who are in charge of healthcare
decisions, admitting that they don’t have the answers, I’m sure, is a scary
place to be. But it’s time to start.
And really, although I understand that implementation can be
difficult, I think that everyone is overthinking this. Everyone is so busy
trying to figure out the perfect way to ‘engage patients’, that it’s not
happening. It’s time to go back to what most of us were taught (I hope) when we
were growing up. Here are my personal hints on how to go forward
- If you don’t know the answer to a question, don’t pretend that you do.
- Ask questions to new groups of people that have new perspectives on a problem.
- When you ask people to join a team, treat them with respect. This means that they have to be fully integrated team members, not afterthoughts.
- If patients are going to be included in a fully authentic way, then the unique limitations on their time, budget and energy has to be accommodated in their engagement opportunity.
- Patient voices must have the same authority and power as every other team member.
- Ultimately, if health care providers/administrators/researchers have questions on how to proceed and engage patients, the best way forward is to just ask us. We're all right here.
And for goodness sake, one patient on one committee isn’t engagement.
Representation requires a diversity of voices in a diversity of roles. This is how we get to new
solutions in healthcare. Everyone working together. We’re going to disagree. It’s
how we’re given the opportunity to both agree and disagree that’s going to make a difference.
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| Chase the Dog Says "It's time to Just Ask" |
Isabel, this is a very timely - and brilliant! - overview on patient engagement, particularly during the recent drama around the future of BC's Patient Voices Network, e.g. "One patient on one committee isn’t engagement".
ReplyDeleteThank you for this!
regards,
Carolyn
Thank you for your kind words Carolyn. As a PVN volunteer, I'm certainly watching that carefully. I actually wrote this before all of that came out. This post came out of my talk at evening rounds (http://www.eveningrounds.ca/events/patient-engagement) in Vancouver. But, wow, was the timing ever interesting when I did push the 'publish' button! What strikes me the most on that one, is what happens when you actively work to engage a community in dialogue and then shut the out of a key decision. What I see, and feel, is very unhappy stakeholders.
DeleteDear Isabel, got to your blog by Carolyn, fully undersign your views they reflect not only what goes on in your country but in all countries and diseases..
ReplyDeleteLiked that I found someone who shares the same views on "If patients are going to be included in a fully authentic way, then the unique limitations on their time, budget and energy has to be accommodated in their engagement opportunity"
Plan to translate your blog with your permission in my language so that it reaches more patients and families..
Thanks for your kind words. Why don't you give me your email and we can continue the conversation off comments? :)
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ReplyDeleteLove this! Such a lovely invitation/ ask
ReplyDeleteAs a complex family mom I really appreciate number four "If patients are going to be included in a fully authentic way, then the unique limitations on their time, budget and energy has to be accommodated in their engagement opportunity."
Let's get 'out of the box' and collaborate
Love this! Such a lovely invitation/ ask
ReplyDeleteAs a complex family mom I really appreciate number four "If patients are going to be included in a fully authentic way, then the unique limitations on their time, budget and energy has to be accommodated in their engagement opportunity."
Let's get 'out of the box' and collaborate
Thank you Kim. I have found that this part has been left out, not willfully, just out of ignorance or lack of imagination. As patients/family members we do have other pressures on our times and without accommodations we simply can't participate. Wanting us as partners requires that our opportunities are actually available for us to participate in!
DeleteGreat post Isabel. #4 resonated strongly with me also. Anyone who has ever had a relative hospitalized where they needed an advocate to communicate with the doctors knows it's only viable to participate if you are a) healthy yourself b) unemployed or stacked with vacation and c) ready to camp out ALL day at said patient's bedside. It's frustrating as all get out and mistakes are made because of it. I REALLY loved this line the best though "We’re going to disagree. It’s how we’re given the opportunity to both agree and disagree that’s going to make a difference. "
ReplyDeleteThanks Lara. That piece about needing a bedside advocate is tough. It brings it home what a place of privilege it is when you have that when so many don't. That scares me. So many don't have that person there to advocate for them. That's why the system needs to do better. So that doesn't become so crucial.
DeleteI really appreciate the kinds words. I'm honoured to put my thoughts out here and share them you all and especially to hear back.
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ReplyDelete