Cancer epatient patient communities Patient Empowerment

Shut Up and Listen to the Voice of the Patient (Please)

Screen Shot 2013-03-27 at 5.04.27 PMThe voice of the patient – we don’t hear it nearly enough. That may sound strange but it is the truth. Healthcare marketers need to open themselves up to patient stories and patient experiences. This is a huge shortcoming in the current healthcare marketing paradigm. Simply put, we don’t spend a lot of time listening to our most important constituents – patients. That two-way communication has not yet become a reality for most of us. Many patient advocates would argue that this is a challenge for all of healthcare, not just the marketers. Whatever the case, when I find an opportunity to share patient stories, I do it. This is yet another example.

As I’ve stated in the past, I am a big fan of Stanford Medicine’s SCOPE blog, and its ongoing series that features stories from patients affected by serious and often rare diseases. Stanford has partnered with Inspire to launch this series. If you aren’t familiar with Inspire, they build and manage online support communities for patients and caregivers. Go to Inspire.com to learn more about them. They are doing great work. (By the way, I have no affiliation with them.)

The latest post in the patient series is written by Dan Adams, a bladder cancer survivor. Dan lives along the Southern New Jersey Shore where he and his wife of 35 years raised three children and recently became grandparents for the first time. Dan is committed to raising awareness of bladder cancer and supporting those who are newly diagnosed through the Inspire/BCAN Support Community.

Dan shares his story which involved battling both anxiety and cancer. Here’s an excerpt from his post on the SCOPE blog:

“During the first couple of years in this war with bladder cancer, anxiety consumed my everyday living. Cancer was always on my mind, but I was unaware that anxiety was running my life. It took a long time, but eventually I learned to recognize changes due to anxiety, things that aren’t really “me.” Inattention to details, aimlessly daydreaming and becoming much more emotional were some of the telltale signs. I realized things weren’t right and I sought the professional help I needed. Thankfully, this help and the encouragement and support of a close family brought me through a very trying period.” (Source: Stonford Medicine’s Scope Blog, The road to diagnosis: How to be insistent, persistent and consistent, February 14, 2013.)

If you’d like to read the rest of Dan’s story and perhaps read other patient stories from the series, click here.

To read and/or download Inspire’s report, Experts by Experience, that includes a compilation of patient blog posts, click here. (http://www.inspire.com/static/inspire/reports/inspire-stanford-experts-by-experience-report.pdf)

15 comments on “Shut Up and Listen to the Voice of the Patient (Please)

  1. I read this fantastic new report when it was published two weeks ago – it is an essential read for all HCPs in my opinion!

    • dandunlop

      Thanks Marie. I agree! I think that anyone working in healthcare should be required to read the report. The folks at Inspire are doing great work – bringing the voice of the patient into the foreground. We need more of this!
      Dan

  2. Dan,
    I’ve always admired and appreciated your willingness to share information to the benefit of healthcare marketers. Your blog posts are always thoughtful, practical, and useful to all of us in the industry. This particular blog struck a personal accord as I was recently diagnosed with bladder cancer. Dan’s story and the Inspire.com site is a resource that I will draw upon, personally and professionally. Thank you so much for sharing

    • dandunlop

      Michael, thanks so much for your kind comment. Your perspective, as someone dealing with a bladder cancer diagnosis, is now unique from that of most healthcare marketers. It will be interesting to have you lend your voice to the conversation. Michael, I send you good thoughts and positive energy as you travel this road. Best regards,
      Dan

  3. Thanks for this, Dan! We’re happy to provide another forum for patients to tell their stories – and we’re grateful for those patients who bravely do so.
    -Michelle (Scope editor)

    • dandunlop

      Hi Michelle, thanks so much for your comment. You guys are doing a terrific job with the Scope blog. Thanks so much for providing a forum where the patient’s voice can be heard. I also think it is great that you have partnered with Inspire on this project! Keep up the good work.
      Dan

  4. Roxanne Jones

    Great post, Dan. Anytime we create marketing materials with patient stories – in their own voices – it becomes so much more powerful. This entire aspect of healthcare marketing communications is definitely something we need to pay more attention to (maybe a theme for next year’s NESHCo conference???).
    P.S. You must be familiar with ePatient Dave and his initiatives to further patient empowerment…?

    • dandunlop

      Hi Roxanne, thanks for your comment! I do know ePatient Dave and am a fan of his work. I’ve even written about him on my blog.
      I like the idea of explore the patient’s voice and patient empowerment as a theme for the 2014 conference. Let’s keep that in mind! At a minimum we should have a patient panel. There are some great patient advocates in the Boston area. We could recruit some of them to serve on a panel.
      See you in May!
      Dan

  5. Dan,
    Great post! I agree completely. Once you’ve been a patient (or followed family member’s care), your perspective changes significantly. I’ve had the opportunity to see the inner workings of chronic disease management through a rural setting and the (lack of) transition to a tertiary care center. Since that time, I now view my role in health care marketing as an advocate who strives to help the patient understand and navigate the system as successfully as possible. Caring for patients and their needs should be the “why” hospitals and physicians view as their core business.

    • dandunlop

      Thanks Amy. It is great to hear your perspective! You should write a guest post for my blog. I’d welcome it.
      Take care,
      Dan

  6. Dan Adams

    Amy, I couldn’t agree with you more. The conversation has always seemed one sided and not a true conversation. Please don’t misunderstand me, I am very happy with my medical care. I say that from the perspective of a successful patient outcome and continued monitoring. It’s hard to say how I would feel had my core issue, Bladder Cancer, been less successful. As I have said, anxiety was never mentioned and I doubt it would have come up even if the conversation was more of a two way discussion. With cancer and many other serious conditions it needs to be part of the total medical treatment.
    Best wishes,
    Battle on,
    Dan Adams

    • dandunlop

      Dan, I welcome you contributing a guest post to my blog, if you’re interested. I believe your perspective would be beneficial.
      Dan

    • Dan and Dan,
      My experience stems from watching my father’s cancer treatment – which started as bladder cancer several years ago (successfully treated multiple times) and subsequent diagnosis with cancer in his lungs and one tumor on his spine. In addition he had diabetes and six weeks before the tumors in and around his lung and spine was found, he had a pacemaker put in. Coordination of care and communication needed to be a top priority but it was lacking in so many ways. My parents and older siblings are still of the belief you just do what the doc says, no questions asked. During the five months of his treatment it was one train wreck after another.

      I’ve always viewed my role in health care marketing as one of providing assistance and education to help the patient make the most informed choice possible for their individual circumstance. Since my father’s illness, that role is more important than ever. The patient experience is far more than offering the prescribed greeting when a patient enters the facility or not allowing too much time to pass in the waiting or exam room. We can learn a lot if we talk to patients.

      Dan Dunlop – thank you for the offer to write a guest post. Can we talk more about that sometime soon?

      Dan Adams – as you said in your message: Battle on. It sounds like you are a putting up a great fight!
      Amy

  7. Maggie Barnes

    I have worked in hospitals my entire career. I never cease to be amazed at the level of disregard for the most important person in the room – the patient. Yesterday, I had a cervical biopsy. (Every woman reading this just winced and with good reason) You are given nothing for pain relief or to lessen your awareness. And at the height of the agonizing procedure, the doctor – a man – looks up from between my legs at my husband, who is letting me chew on his hand, and says, “I’m always surprised at how much this hurts them.”

    If I could have, I would have socked him in the mouth. In retrospect, I should have kicked him.

    Not offering pain control, not being compassionate, offering measures of comfort – it seems we have lost the art of caring for humans while being too impressed with the latest medical toy.

    Back to work – thanks for the chance to vent!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: