Reduce the feeling of isolation.
Knowing a real journey can help another family to recognize doubts and emotions that are also part of the journey.
Tell your story
Esta página explica como oferecer um relato à NeoGenomica. The first contact opens a conversation: you still do not authorize the publication and you can ask questions before deciding.
The purpose
Your experience can help others understand the journey.
A personal report can show aspects that do not appear in a report. It does not replace medical advice and does not represent the expected result for other people.
Make the journey more concrete.
A narrative can show how evaluation, sample collection, waiting and results were experienced, without transforming individual experience into a rule.
Open space for listening.
Patients and caregivers can indicate what they would like professionals and other families to understand better.
How it works
First we talked. You decide whether to publish.
No reports are published automatically. The contact serves to understand the proposal, explain the steps and answer your questions before making any decision.
- 01
First contact
The patient, guardian or caregiver says they would like to tell their story and only provides what is necessary to start the conversation.
- 02
Conversation about the proposal
The team clarifies how the report could be prepared, what data would be used and the name, image and voice options.
- 03
Creation and review
The report can be prepared in text, audio or video. You review any edits before deciding.
- 04
Authorization before use
Publication only occurs after your final approval and authorization for the combined content and channels.
Participant Choices
Sharing doesn't have to mean revealing everything.
The person can define how they want to be identified and what parts of the experience they feel comfortable making public.
Identification
Choose between name, first name, initials or pseudonym, depending on the privacy assessment of the case.
Image and voice
Whether or not to authorize photography, video and audio separately from the story text.
Health Details
Decide which clinical, family and genetic information can be mentioned, without unnecessarily attaching reports.
Promotion channels
Authorize separately the use on the website, social networks, press, events or printed materials.
Final approval
Review the edited content and confirm the version that can be published.
Privacy and autonomy
Health data requires additional care.
Genetic and health information are sensitive. Before you send, know what data will be used, who can access it, how long it will be kept, and where the story might appear.
- 01
One authorization for each use
Initiating contact, allowing the use of data and publishing the story are different decisions.
- 02
Children and teenagers
The guardian authorizes participation, and the child or adolescent receives an age-appropriate explanation. The refusal must be respected.
- 03
Even without your name, someone might recognize you
In rare conditions, the combination of diagnosis, location, relationship and image can also identify a person.
- 04
You can change your mind
The team must explain how to withdraw future authorizations and what cannot be withdrawn after a material has already been released.
Before contact
Start with a conversation, with no commitment to publish.
You can ask questions about the process and privacy before deciding whether to participate.
Frequently asked questions
Before sharing.
Who can contact?
Adult patients, legal guardians and caregivers can get in touch. The possibility of participation is assessed individually before any extensive data sample collection.
Do I need to use my name or show a photo?
No. You choose separately whether to authorize name, image, voice and health details.
Can I change my mind?
The participant must have a channel to withdraw future authorizations. The team needs to explain the practical limits regarding content already released or materials already distributed.
Does a story replace medical advice?
No. Reports present individual experiences and do not serve as a diagnosis, indication of examination or treatment recommendation.
Your time, your choice
Start by just saying you'd like to talk.
The first contact serves to clarify the process. He does not authorize the public use of his story.
For patients and families
Information for each stage of the journey.
Start with the topic that comes closest to your question.
