Take Action: Patients

 

We recognize the challenge in what we are asking you to do; It isn't easy to just start sharing your stories with your doctor, likely unasked and unprompted. But when you do, you create the opportunity for those stories and the realities they reveal to be a part of the care plan that emerges, something that actually fits into your life. And it serves as a reminder to all of us of the importance of careful and kind care.  

We want you to know that you are not in this alone. The Patient Revolution is here to be your partner and offer support. We've highlighted some of the tools we've developed below. We encourage you to use them and send us feedback

We are always looking for collaborators and partners. If you are a person with a story to tell about the value of patient stories in clinical care, a tip or trick that you've developed and want to share, or a program or tool you think we need in the world to achieve our mission, please reach out

In the near future, we will be looking for community and clinical partners to explore developing careful and kind concepts at the organizational and systems level. If you think your community might be a good fit, let us know.

 

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Download the cardsInteractive version coming soon.

PLAN YOUR CONVERSATION TOOL

One thing that helps make it easier to share stories with your clinician is to practice. We've created the Plan Your Conversation tool that can help you think through what you want to say. These cards ask you to complete the following statements and then practice with someone else or just say it outloud to yourself.

  1. I would like to talk about...
  2. It is important to me because...
  3. It might help you to know...
  4. I hope this conversation leads to...
  5. I'm nervous this conversation will lead to...
I was concerned about what the long term story about my diminishing eyesight might be. The cards helped me feel more confident. When I went into the doctor’s office, I knew what I wanted to say.
— Care Conversation Workshop participant

BARRIER CARDS

The barrier cards were developed to help us capture stories from patients about the barriers they face in speaking up in the clinical encounter. 

Think about a recent visit you had with the doctor or nurse. It could be one for yourself or one where you were with someone else as a caregiver. Think about what you talked about and select the cards that you think impacted that visit. Now contact us. We'd love to hear your story.

I’d like to talk to my daughter’s neurologist about what might have caused my daughter’s epilepsy. I worry it is something I did during pregnancy. But I feel like the question would annoy the doctor so I don’t ask.
— Patient Participant, Mother
Download a PDF of the Barrier Cards in english. Interactive version coming soon.

Download a PDF of the Barrier Cards in english. Interactive version coming soon.

Download a PDF of the Barrier Cards in spanish. Interactive version coming soon.

Download a PDF of the Barrier Cards in spanishInteractive version coming soon.


ICAN DISCUSSION TOOL

The Instrument for Patient Capacity Assessment (ICAN) discussion tool was developed by our partners at the Knowledge and Evaluation Research (KER) Unit to help enhance conversations between patients with chronic conditions and their clinicians with the goal of minimizing treatment burden and identifying care plans for patients that are feasible given their resources and capacity. It was developed for use by clinicians but if you think it would be useful in your visits and you'd like to share it with your doctor, feel free.

Visit the Minimally Disruptive Medicine website to check out the tool and see interviews and stories from clinicians and patients. 

The team wrote a paper about the development process for the tool. Like almost all the tools and programs development by the KER Unit and The Patient Revolution, the tool was developed using a design approach and in collaboration with clinicians and patients. Meaningful conversations in living with and treating chronic conditions: development of the ICAN discussion aid

You mean the doctor might ask me how I am coping with my disease? Well, that would change the world.
— Patient Advisory Group member

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Download a PDF of the reflection document and fill it out before your next visit.

REFLECTION DOCUMENT

A simplified version of the ICAN tool was developed in collaboration with the clinicians and patients at Yale New Haven Hospital's Adult Primary Care practice. The questionnaire asks 4 questions.

  • What is one non-medical thing about your life you think your doctor should know?
  • What is one thing your doctor is asking you to do for your health that feels like a burden or feels harder than it should?
  • What is one thing your doctor is asking you to do for your health that is helping you feel better?
  • Where do you find the most joy in your life?

If you think this tool could be helpful for you, we encourage you to download it, fill it out and share it with your clinician.