OPOR – The Patient Perspective

Perhaps one of the most powerful presentations during the OPOR conference was made by Doug Gosling, a 56-year man suffering from terminal prostate cancer.   Mr. Gosling offered a poingnant and very personal perspective on his use of the Internet to better understand and cope with his illness.  At one point, as Mr. Gosling shared the myriad of emotions he experienced over the past few years, you could have heard a pin drop in the room. 

Like me, Mr. Gosling has worked with IT most of his career. He applied this experience to his on-line quest and has thought deeply about how we might use this powerful tool to greater advantage.  His advice to the audience included:

– Stop producing more of the same.  He implored the audience to experiment with new ideas and new approaches.

– Better leverage what already exists including information, resources, and infrastructure.

– Identify and address the gaps. 

Mr. Gosling noted that there are many gaps to explore and that we should put more energy into exploring these gaps rather than re-creating what already exists.  According to Mr. Gosling these gaps include:

– The existing resources do not addess the entire patient journey.  

– Many resources seemingly ignore what Mr. Gosling refers to as “the emotional soundtrack” of journey.

– Access to resources is not universal nor is the information understandable in many cases to the layperson.

– Need more access to personal medical information.  According to Mr. Gosling there is a wealth of information about specific conditions an diseases but it is difficult to get access to one’s own medical information.

– The human element is missing.

While there were many good, informative presentations during the one-day event, I found Mr. Gosling’s to be the most compelling and the most useful.  We need to hear more from the potential users of Personal eHealth applications about what they need and the manner in which they want information presented.  As I have argued in past blog posts, I think that we need to take more a Product Management approach to developing Personal eHealth applications that starts with a firm understanding of what users want and how they will use on-line services and information as a tool to understand and manage their health.    We need to engage the end-user in the design of Personal eHealth applications, not develop applications that address what we think their needs might be.

I applaud Mr. Gosling for having the courage to share what is a very personal story in order to advance the development of Personal eHealth applications.  I only hope that we truly listen to what he has to say.  You can learn more about Mr. Gosling’s journey and his thoughts on the power of IT to help each of us better manage our health at his blog http://www.talkingaboutcancer.com/

Mike

2 responses to “OPOR – The Patient Perspective

  1. Amen Mike. I couldn’t agree with you more, especially on your:

    “We need to engage the end-user in the design of Personal eHealth applications, not develop applications that address what we think their needs might be.”

    We need to make sure we create Personal eHealth apps that actually make life easier/better/cheaper/faster for the end user from their perspective and not the systems perspective. I am looking forward to seeing applications that empower the end user, while figuring out a way to get the majority of the stakeholders (ie docs, RHAs, etc) to also play ball. I think the second part will be harder than the product design. Small IT companies who often “build the better mousetrap” are often not politically astute to the existing provider political enviro.

    Mark

  2. The very nature of the Internet is that it shifts the “balance of power” in favour of the end-user. Indeed, the Internet, by its very design, allows every to participate as equals. From personal web pages and Usenet News in the early days to Twitter and blogs today, the Internet has provided an inexpensive platform that can be used by anyone to reach a wide audience. I would hazard to bet that few successful applications (e.g.Twitter) are used todat in a manner that their developers originally intended. End-users figure out what how to use the tools to meet their own needs, not the other way around.

    I passionately believe that the Internet will be a catalyst for change in the way that healthcare services are delivered and in the manner in which people interact with the health system. As I said in response to another post, people will go to the Internet for information and they will take this information when they visit a healthcare professional, whether or not the healthcare professional likes it or not. So, while I’d like to see healthcare professionals coming on board, I don’t think that getting them on board is a major concern. I am more interested in exploring how the Internet can empower people to take a more active role in looking after their own health.

    Mike

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