Patient Wisdom: A Rich, But Unfortunately Underutilized Resource

Last month, I had a very interesting conversation with well-regarded cancer survivor, patient activist and CEO of the non-profit Stupid Cancer, Matthew Zachary. This conversation took place just after a presentation Matthew delivered for an all-Web digital health summit I produced. Anyone who knows Matthew recognizes that he is direct, uncompromising and passionate about his mission: helping young adult cancer patients, survivors and their families find support, encouragement and resources. 

During our talk, I asked Matthew why more digital health innovators don’t actively seek out patient input when developing new products, services and tools designed for or impacting consumers. Is it because some believe patients are annoying and just get in the way? 

How did Matthew respond? Well, he suggested that if people “are stupid enough to believe patients are annoying, they don’t deserve to talk to them.” He followed up by noting that actively engaging patients is not an option and he’s constantly disappointed that innovators don’t seek consumer input more often. 



This conversation got me thinking: why is it that we (i.e., marketers, health executives, government officials and others) don’t seek patient input, or wisdom, more often? It’s not like patients don’t know what they are talking about. Even more, they can provide us with a lot of information and insights that could help improve our efforts, make them more likely to succeed and even drive innovation.

Over the past few weeks, I’ve started to informally ask some of my friends and colleagues whether they are soliciting patient wisdom enough and, if not, why? Some of the responses I received include: 

  • I Want to Bring Patients Into Our Work, But I Only Want to Talk With the “Right Ones”: This was a common response to my question. Many health executives, academics and others are busy people. Sometimes soliciting patient input can seem like more trouble than its worth because it’s hard to identify people who will provide useful commentary, rather than complain. 
  • I Have Lots of Patient Data Already: Collecting market research data and analyzing social media chatter are excellent methods of learning more about consumers. But, sometimes this is not enough. For example, even the best survey data won’t provide the types of insights that watching someone go through their normal routine and asking them questions about why they are doing certain activities can reveal. Sometimes engaging people in conversation can yield lots of important information about their behavior. 
  • Patients Don’t Know What They Are Talking About: Many patients are uninformed about the intricacies of topics like product design, marketing strategy and data interoperability. Executives want input from experts who can help them solve pressing problems immediately. Going to patients – even in cases where a product or decision may have a big influence on how consumers experience care – can seem like a waste of time. 

I believe all of these points are valid. But, despite their validity, I think most people reading this essay would agree that patients could provide valuable input and insights, even in areas where they don’t have domain expertise or in cases where there is lots of consumer data available already. 

So, what will it take for us to take advantage of patient wisdom more regularly? I’m still working on the answer to this question, but I believe it starts with skill building. This means, teaching health executives, providers and others how to engage with patients in ways that will be effective and – more importantly – efficient. As for patients, it’s about helping them understand how to engage with health providers, organizations and others in ways that are both positive and fruitful. 

What’s your take on this question? How can we seek and use patient wisdom more often? I’d love to hear what you think.

1 comment about "Patient Wisdom: A Rich, But Unfortunately Underutilized Resource ".
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  1. Janet Kennedy from Get Social Health, June 28, 2014 at 7:04 p.m.

    This is an important conversation to have Fard. I wonder if we need patient advocacy training/teaching so patients better understand how to express their concerns? Or is it not their problem - it's the healthcare professionals that should be listening better?

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