What stories and what science do we find and share online when we are striving to connect with other “patients” or “carers” like us?
In this podcast, Stefania takes the case of two family cancer syndromes (BRCA and Lynch) to explore the way social media can shape everyday coping with the diagnosis of a rare or little known health condition.
https://offtheshelf.org.uk/event/digital-media-use-for-health-and-illness-dr-stefania-vicari/
RECOMMENDATIONS
Genomics be used in health care in a targeted way for the purpose of diagnosing and treating disease. It should not be used for aesthetic purposes.
Strong protections, and appropriate, adequate supports are put in place to assist individuals, especially individuals from vulnerable groups, in making informed decisions around genomic testing options during their journey towards a diagnosis.
Individuals are given the option either during or following the genomic testing consent process to share their genomic data for the purpose of supporting health research. The research should contribute towards better health outcomes for individuals or for society, and this contribution should be clearly detailed and explained during the consent process.
Members of the public who consent to share their genomic data to health research should not receive any financial reward or preferential treatment from the health system or from third parties, for example, medical cards or discounted premiums.
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The strange juxtaposition of utter pain, destruction and sadness in my private life and the brave, strong and positive patient in public was stifling. I didn’t want to hear how I was an inspiration simply for trying not to die. I didn’t want to hear how brave I was. I didn’t want to hear how upset my own cancer made Sally from fifth grade (who hadn’t spoken to me since).
https://www.curetoday.com/view/patients-with-cancer-don-t-owe-grief-tourists-anything
“If we can manage to have all these cancer diseases and to live with it, then we can handle reading about it.”
“In multiple studies, the majority of patients with experience of open notes report that reading their notes is very important for feeling in control of their care, remembering their care plan, and understanding why medications are prescribed. Patients report trusting their provider more, greater goal alignment, and teamwork. These benefits are reported most often among patients who are older, non-white, those with fewer years of formal education, or do not speak English at home. Older and chronically ill patients, in particular, appreciate the opportunity to share their notes with family and friend caregivers.”
“Being research active, in my opinion, is fundamentally about our willingness and diligence, as patients, to ask questions and seek high quality evidence either as a patient, a health professional, and from an organisational standpoint.
As patients we need to ask for the evidence. We should be able to read about the findings in plain English. We must be part of a meaningful and informed conversation. We should have guidance on the questions to ask about whether to take part in research. We must be kept informed about the progress of individual studies. We should be able to find out how to get involved with researchers to inform, shape, and influence all aspects of the process. A research active patient might be described as purposely enquiring about evidence to support their own health.
For health professionals it may be about asking how research can assist in all stages of the patient pathway. It is where research moves from being a last option to a helpful guide. … A research active health professional might then mean being fully engaged with research as a means of benefiting patients through networking with colleagues and the public.”
Approximately 2,700 people are diagnosed with bowel cancer each year in Ireland.
Treatment options and survival rates are better than ever – especially when bowel cancer is found early.
The term ‘cancer survivor’ commonly refers to a person that has been diagnosed with cancer at any stage during their lifetime and includes those who are undergoing treatment and those that have recovered from the disease.
The advice contained in this book is for cancer survivors who have been advised by their medical team to follow a healthy eating diet.
This book is also suitable for survivors who have finished their medical treatment and have been told they are in remission (given the ‘all clear’) from their disease, or those who have recovered from the disease.
There is currently no reliable screening test for ovarian cancer. Unfortunately, most women with ovarian cancer are diagnosed with advanced-stage disease (Stage 3 or 4).
This is because the symptoms of ovarian cancer (particularly in the early stages) often are not acute or intense, and present vaguely. In most cases, ovarian cancer is not detected during routine pelvic exams, unless the doctor notes that the ovary is enlarged.
The sooner ovarian cancer is found and treated, the better a woman’s chance for recovery. It is important to know that early-stage symptoms are not silent – so women should be extra alert and watch out for early symptoms.
http://www.polyposisandlynch.com
Despite a devastating family history of cancer, no doctor took note of the history and took action to determine if there was a hereditary cause.
Having just one physician dedicated to the practice of hereditary cancer awareness and prevention would also not only potentially save lives, it also would save on the enormous expenses incurred because ofa cancer that wasn’t prevented or caught early.
https://www.curetoday.com/view/hereditary-cancer-demands-a-new-medical-discipline
Lynch Syndrome Ireland 