The Patient Voice

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.

About the author

John Lynn

John Lynn

John Lynn is the Founder of the HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

1 Comment

  • Hi John,
    I agree that we need to do a better job of getting more patient stories into the main stream. After years of following (and becoming friends with) a few of the top professional advocates and speakers, I feel like I have a better understanding of why these same people keep popping up at events and in the press. As a patient, who also works full time, and is passionate about advocacy in whatever free time (and energy) I have, I also understand the challenges faced with getting people like me onto a stage (literal and metaphorical) more often.
    1) Professional advocates and speakers worth very hard. People like Regina, juggle young children, volunteering, ad hoc mothering and mentoring of other patients, and doing gigs that pay the bills. Those interviews that help advocates increase their profile take time and don’t pay the bills.
    2) Event organizers and reporters don’t always work as hard as they should to identify new voices. There’s also the concern about getting a keynote speaker who is a known entity so the event organizers can be sure they will draw in ticket sales.
    3) The importance of patient inclusion is still in its infancy. If an event is forward-thinking enough, they may invite one patient on stage. Often this person is not compensated for their work, and it’s not rare that they have to cover their travel expenses as well. This limits the patients able to accept these engagements. Are we creating a situation where the only patient voices come from those who are independently wealthy or have a network of patrons to support them? What are the implications of this scenario?
    4) I think the approach that Regina used at HIMSS (and others) is the best solution at the moment. Get big names to insist on bringing other patient/advocates with them to events. Be sure they are compensated fairly. Urge stakeholder to insist on patients inclusions in events and in publications. Leave positive feedback when patients are included fairly. Nothing will change until money is on the line. If people refuse to attend events without patients, or boycott those with inequitable compensation models, then the status quo will not change.

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