What if patients made the recommendations?

I was reading through Caroline’s post about What I wish I had known before treatment. She mentions an article about recommendations from breast surgeons regarding prophylactic mastectomy. There is concern that more patients are opting for them, even though there is no oncological benefit (article is here – if you want a copy and don’t have access, email me).

I see lots of these recommendations – and misinterpretations of them. I found this article to be interesting because of its emphasis on individual patient decision making. It wasn’t pushing a particular recommendation, just saying that this is the evidence to help you and your patient come to a shared decision.

I do wonder, however, what would happen if the recommendations came from patient’s rather than “evidence” that has not been humanized. I wonder if instead of giving patients the “facts” you gave patients a booklet or video of stories from different patients who opted for the different treatment options. You let other patients describe the impact of the different treatment decisions.


A lot of the decisions that breast cancer patients need to make are emotional decisions. They are not necessarily logical decision. The choice between lumpectomy and mastectomy (when it is a choice) is individual, but patients aren’t adequately prepared to make that decision. They are presented with facts from a medical system perspective. For example, in the tools to help you make your decision you are told that if you have a lumpectomy, you will keep your breast however, you’ll need to be screened (e.g. mammogram or MRI) every 6 months. If you do a mastectomy there is no systematic screening. It is very much a medical system oriented description of things to help you make your decision. However, the decision isn’t strictly a medical decision – it is an emotional one. It is a quality of life decision. There are also a host of emotional and practical side effects that are never discussed. They are things that the medical system doesn’t care about, but the patient does.

Age also matters in these decisions – and yet most of the evidence that is used for recommendations does not take this into account. A young survivor (I’ll use under 50 at diagnosis, although most use under 45) has very different longer term life circumstances when making their decisions – and yet that isn’t often taken into account when looking at statistics to provide recommendations.

So I wonder, what if there was a resource that was a series of concise yet down to earth patient stories, told from a patient perspective? A retrospective analysis of patient experiences – provided in both storied text format and in video format. Something that really helps patients make decisions from a patient perspective, not a physician perspective. Something that deals with the emotional and longer term health impacts of the decision – not just from a medical system perspective but from a human who has to spend the rest of their lives living with the decisions they make.

What do you think? Would this type of resource have helped you make a decision? Would surgeons be willing to provide this type of resource for patients? Would this be a useful discussion topic for Virtually Connecting ePatients?

Feature image CC0 from Pixabay

  • Becky


  • Becky,

    You might enjoy Jesse Gruman’s Center for Advancing Healthcare blog posts on cancer:

    Here’s my submission on palliative care:

    Living with MBC,

  • I absolutely agree with you and I’d love to see this as a future discussion topic on VCeP

  • Was watching the hypothes.is hallway convo from #digped, and thought of this post… and was thinking what if we had patients making digital annotations of medical texts/articles about specific conditions?
    For medical professionals that would combine the technical descriptions with the patient experiences. Allow embodied reading.
    And for patients that might help those less technically proficient develop their technical knowledge as patients who are technically proficient make notations on particular aspects of a text.

    Obviously still a work in progress thought, but wanted to share with you/see what you thought about it being something we could grow-off

    • Brilliant … maybe we can talk about this idea on Friday’s VC ePatient blogging session …

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