Last week we hosted a patient chat on an issue near to many people’s hearts: patient stories. Why are they important? Why do we share them? Many new faces shared many reasons from using patient stories to help others (or yourself) cope with their disease to using patient stories to transform and humanize patient care.
There were a lot of questions raised during this chat, from how we translate these stories we tell each other online into patient care, and how we merge the work of “big data” with the work of patient stories. Though many questions remain unanswered, there was still a great consensus during our chat that patient stories are something that is very important towards the development of more patient-centered care.
Thanks all that joined us, especially the many new faces @gfry, @Sermo, @drunkitty2000, @breastlessAfrik @yinkavidal and others. Join us all for the next #patientchat on Feb 7, 2014 at 1pm EST / 10am PST about empowering caregivers with a special guest from Carenovate Magazine!
Read more of the responses below:
- @gfry: why do I like patient stories? There is no soul in data. Data driven medicine is bad medicine
- @gfry: It’s the only natural way to communicate and tell it as it is, in all it’s dimensions. Non-reductionist
- @yinkavidal: patients’ stories help me to do better research projects to improve quality of care.
- @markjohn1: patient stories help to raise awareness for others in patient activism.
- @abrewi: cause they inspire, comfort, educate, and are a driving force for change. Patient stores personalize healthcare.
- @darlakbrown: Why do patients share stories? It is healing to get support from others. Plus to educate others.
- @AraSevera13: … To search for answers. To reach out to those they feel don’t “hear them”
- @AraSevera13: To unburden themselves, to feel part of a collective / not alone … Some, however, for sympathy…
- @gfry: Unfortunately stories are expensive and getting more expensive all the time, while pure data analysis is cheap.
- @sermo: the sense of community that comes from patients sharing their stories, especially online is so powerful
- @drunkitty2000: I share my story in hopes of helping others. Share my research & let others know they aren’t alone.
- @yinkavidal: ur story, way events happen may be unique to you. learn better treatments from different ways illness manifests.
- @abrewi3019: sharing does take courage putting yourself out there can and is exhausting.
- @darlakbrown: also what about telling your story to your doctor at appt time? Very important to be able to do that.
- @Sermo: patients need to feel safe to open up, even about things they think are silly, to their MDs. You never know what clue is needed,
- @abrewi3010: patient stories are the only thing that consistently sparks change, inspiration and conversation. Their power scary at times.
- @breastlessafrik: telling out stories drives home message that we (#patients) are not “data” or “cases” for research. We are people.
- @katiissick: we pts w #mecfs are preparing a revolution so sharing our stories sharing the science is our best weapons…
- @drunkitty2000: #healthcare needs to listen to #patientchat in order to understand whole story and accurate treatment
- @katiissick: re: humanizing the patient, funny thing, but for me I want my disease taken care of first.
- @abrewi3010: patients are puzzles, docs must be willing to get pieces from multiple sources.
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