For years I’ve been hearing over and over from various places that we need more of the patient voice in healthcare. These messages have come largely from prominent patient advocates like Regina Holliday and ePatientDave. The Society for Participatory Medicine has also had a strong voice in the fight to include the voice in healthcare and in particular in healthcare IT. While each of these people and organization have compelling stories to share, I’ve wondered if they’re really making the impact they want to achieve.
One problem I’ve seen with this effort is that Regina and ePatientDave are seen over and over and over again at conferences. While it’s great that each of them is advocating for the patient voice to be included in healthcare, I wonder if the healthcare IT community has basically tuned out the message because they’ve heard it over and over and from the same two people. If this was a really massive movement, then why don’t we have dozens or even hundreds of patients that are sharing their stories in prominent places?
I’m sure there are some really compelling reasons why we don’t hear from more patients and not the least of which is that they’re not invited. I don’t think that Regina and ePatientDave really want the lime light. They just want the message they espouse to be heard. So, I wonder if their goal wouldn’t be better served if they started sharing their spotlight with hundreds of other patients. I realize this can be a tricky proposition.
However, I first saw this happening at HIMSS where Regina worked together with HIStalk to have a number of patients attend HIMSS and share the patient voice with the healthcare IT Community. I thought this was a great idea and a really good step forward to diversifying the number of patient voices we hear.
As I’ve thought about this a bit, I decided that I wanted to do more to share the patient voice on my network of blogs as well. So, I decided to reach out to a number of patients and provide them a platform where they can tell their story. In some cases this will be about healthcare IT and how it impacted patients. In other cases it might just be a story about the healthcare system in general. Some will be good. Some will be bad. I told them that my goal was to add a little more of the humanity back into what we think about when we think about healthcare.
I’ve got a couple of these patient stories queued up for this week and hopefully we can make this a monthly (at least) fixture across the network of Healthcare Scene blogs. If you are a patient with a story to share, or know someone who does, we’d love to hear about it on our contact us page. I’m especially interested in hearing stories from lesser known patients. Hopefully we can use this platform to share more of the patient perspective. Be sure to let me know what you think of the patient stories this week.