My Journey
Summary
As a breast cancer patient I want to know what to expect next on my journey so that I can prepare myself for the next step.
Description
As a breast cancer patient I would like to know what to expect next on the patient journey. This will help me find guidance , trusted information and be prepared for what's ahead. The current sources of information are numerous, confusing and I don't know what to believe. My wishlist / ideas: 1. I would like to have a curated set of information describing the next steps on my patient journey ; starting from at time of diagnosis ; understanding of disease, available treatment options, impact on daily life and right through the journey. 2. Suggest me and connect me to fellow patients who are on the same point on the journey to share experiences ; advice with each other; for motivation and inspiration; for discussing psychological support and shared experiences. 3. An option to connect to specialists / health care workers to answer my queries on what to expect / procedures. 4. A digital assistant to guide me through my journey with trusted information (a wiki of my health ) would be nice along with connects to a social network of fellow patients . 5. If it could bust medical jargon for breast cancer that would be also nice.
Thematic Area
1-Awareness and literacy
Patient Champion
Team Composition would benefit from
Web/Mobile App developer, chat developer, UX Expert, Patient interaction / advice experience for breast cancer patients
References/Resources
https://www.researchgate.net/publication/282379847_Understanding_breast_cancer_patients'_journey_from_diagnosis_through_survivorship https://www.cancer.org/cancer/breast-cancer/treatment/treatment-of-breast-cancer-by-stage.html
Wish list / call for resources
"Breast cancer patient journey - reliable information."Uni Spital Basel: is there a typical journey for Breast Cancer Patients?Something like this?https://www.jmir.org/2015/5/e132/#app1https://www.breastcancercourse.org/treatment-timeline/
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1. Awareness and literacy
Patients think that the general public should be more aware of the risk of acquiring specific diseases (especially cancer). The need to do regular check-ups and screenings, and the benefits of both, should be made known and pushed (e.g. PSA or Pap test screening). In addition, awareness of reference/normal values, and the meaning of these, should be communicated to physicians and patients to align knowledge and medical literacy among the patient, caregiver and HCP communities.
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