Monday, July 6, 2015

Thoughts Wanted: Connected Cancer Care


It’s official.

On July 9, 2015, I will be participating in the President’s Cancer Panel workshop: “The Connected Cancer Patient: Vision for the Future andRecommendations for Action.”  Technically it has been official for over a month now but I’ve been somewhat certain that I would receive a call that said, “Hey, thanks anyway but we found someone better than you to represent the patient voice.”

However, on July 2nd, mere minutes after ending a collaboration call with fellow invitees Janet Freeman-Daily and Corrie Painter, I received my zip file of itinerary and agenda from the NIH.

So, it is officially official now!

Specifically the invitation states:

We’re asking you because you have the expertise and knowledge needed to help us envision a fully interoperable health system. Even as evidence emerges across health areas suggesting that connected health approaches can lead the way to better health outcomes, it is not yet clear what a truly connected health system of the future looks like, what barriers to achieving it are highest priorities for intervention, what individuals/patients and their families want from such a system, and what strategic partnerships are needed. Broad stakeholder involvement will be needed in efforts to achieve a connected health system that starts with patients at the center; clearly, this requires action beyond the health care system.




Patients at the center.

Patients.
At.
The.
Center.

This phrase is a veritable mantra in the patient community and, when the invitation came through, I must have read this line six or seven times and then looked back at the organization the words came from. The tippity-top of our governmental heap. Regardless of your opinions of our president, the Congress or governments in general, you must admit, this is HUGE. And I’m honored to be contributing.

Inviting patient opinion is just good sense but, inviting patients to sit at the table and truly collaborate is fantabulous acknowledgement. Acknowledgement that patients are experts too and acknowledgement that the only way to build a truly connected health care system is to truly connect with those involved in the process. The majority of the existing pain points have been topics of discussion for years, now we need to connect around visions, wants, desires that can better meet the needs of all. 

While the physical table is not immense enough to invite every cancer patient and advocate to join us, your individual and collective opinions are critical and necessary to create a truly representative vision.

On July 7 (8:30pmET/5:30pmPT), the #hcldr (Healthcare Leadership) chat will be gathering thoughts on the topic. All are welcome and additional context and details are available on the #HCLDR blog. During the chat, the following questions will be posed:
  • T1 What are critical unmet health care needs among patients and families that could be addressed with connected health approaches?
  • T2 How could connected health approaches promote patient activation & engagement, particularly in cancer?
  • T3 How can engaged patient communities be encouraged to contribute to health system reform? How might their role be formalized?
  • T4 What communication tools would help patients be more engaged in their care?


Personally, I would like every interested voice and representative patient group to be exemplified in one way or another at this workshop and I acknowledge that Twitter doesn’t work for everyone. So, if I haven’t already taken you out for a cup of coffee to discuss your thoughts or bombarded you with a “What do YOU think?” email, please hit me up before 7/9 with an email, a tweet, a Facebook post, a phone call, a response blog, whatever you feel is the most appropriate medium for sharing your thoughts on concrete visions for the future of connected health.

Send me your thoughts on the above questions, send me thoughts on similar questions, send me particular considerations for an underrepresented demographic, or just send me a diatribe on what your visions for a connected healthcare system look like. (My email is conveniently my first and last name at gmail dot com. If you put something catchy in the title like “President’s Cancer Panel” or “Thoughts on Connected Health” it will magically rise to the top of my inbox!)

If surveys are more your style, please feel free to provide your answers to all of the #hcldr chat questions here

Please know that, as advocates for, and representatives of, the patient voice, Janet, Corrie and I will be as front and center and vocal as allowed in this collaborative environment. We are looking to learn, to share, to emphasize action and to move the collective needle ever forward.


NOTE: 
On July 9th, you can follow the panel highlights on Twitter using the hashtag #cHealth4Cancer