As you will know we have produced a report with feedback from our short bowel syndrome survey.
We have also worked with credible agencies to help recruit patients and carers to share their experiences in order to educate people about life with SBS-IF/HPN.
When we elect to work with an agency we do a lot of background checks and have several calls to determine exactly what our members information will be used for. We do not ask members to take part in anything that we are not 100% happy with.
We also ensure that each participant will be given a thank you for sharing their experience. This will vary from agency to agency. We also help screen interested parties to minimise any stress.
In most cases we do not know or are unable to share the details of the customer, all we have is the agency contacts to work with.
We firmly believe that even is there is a growing interest in seeking information this should not compromise the patients or carer in terms of confidentiality. We go to extreme lengths to protect our members.
PINNT also sign confidentiality documents to secure the information being shared both ways.
We strongly recommend that anyone interested in sharing information should proceed with caution and only work with credible groups who can support you.