Missing! The patient voice

So I was at a great event last night called, “Design Thinking in Healthcare.” Featuring a panel of speakers with experience that ranged from communications or support services within a hospital, telehomecare and eHealth, to digital experts, the idea was to explore how patients can be engaged to improve the systems that serve them. Well, ok, it was a bit deeper than that, but that was pretty much the bottom line.

The content was rich, with a lot of great insights coming from the speakers about the holes in assessing patient needs. For example, when you visit an emergency room, the hospital sends out a satisfaction survey to evaluate your patient experience. The problem is that this is usually three months after your hospital visit, and you either don’t remember exactly how you felt back then or frankly, since it was three months ago, you may not care anymore. A great example of a lost opportunity to hear about the patient experience.

Things got really interesting when one of the panelists, Cliff Harvey, VP Planning, Facilities and Support Services at North York General Hospital, while discussing the assessing of patient needs, commented that, “We are all patients,” to which another panelist, Craig Thompson, Director, Digital Communications at Women’s College Hospital disagreed, saying, “Actually we are not all patients. We aren’t in that place.” Yay, Craig!

This validation of the patient experience as belonging to the person who has lived it, or is living it, was nice, but it really highlighted the fact that there were no patients on the panel. So what we had was an energetic conversation about patient need, without the input of an actual patient. Weird. Colleen Young, community director of Mayo Clinic Connect, came close, with her discussion about the value of the patient voice, but although she is an expert in the area of building online communities to help patients connect, she isn’t a patient.

It got me thinking about the cost of not giving patients a voice. If we aren’t a part of these larger discussions, if we aren’t at the table to share what would make our healthcare experience amazing, how can anyone really know? How can systems and programs be created that effectively and appropriately meet our needs if no one has really asked what those needs are?

If there is one thing that most patients and caregivers are good at, it is knowing what they need. They’d happily share, you just have to ask.

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