Your personal health record
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What should be in a PHR? How can your caretaker help manage this for you? Why do I need this if my doctor has this information?
Whether you've been sick for a while or are early in a diagnosis, you'll have a lot of health information to keep track of. If you have not been keeping close track of your health records, such as your medication list and other details, it is vital that you do so now.
What should go in a personal health record?
When it's time to ask for help
If you find it hard to ask for help with your illness, you are far from alone. But now that you are considering palliative care, your illness has progressed to the point where asking for help and assistance is a vital part of your continued health journey.
"Sometimes you hear the word cancer (or another diagnosis), and you don't absorb anything after that at the first diagnosis appointment."
Shannata Wynn, MBA, BSP, CCMA Practice manager, Sentara Palliative Care Services
This is a good time to start a conversation with your loved ones and caregivers about your health wishes. For example, talk with them about what "quality of life" means to you.
Your palliative care team understands how to talk with you compassionately about health decisions. They will help you and your loved ones and caregivers start these important conversations about the future of your health. For this reason, it's a good time to consider inviting a family member or friend with you to doctor's appointments.
How a caregiver can help
If you’ve been managing much of your care by yourself up to this point, you may wonder how adding someone else to the team can help.
Your caregiver might help with appointments by:
- Taking notes at the appointment.
- Keeping an accurate and up-to-date list of the prescription medications and over-the-counter medications, vitamins and other supplements you’re taking to be shared at each appointment.
- Helping make and maintain your schedule of doctor’s appointments and other appointments related to your chronic illness.
For your consideration: Sharing access to your electronic health record (EHR)
Did you know?
Patient portals/electronic health records are secure websites for personal health information and resources linked to a patient's electronic health record.
A patient portal allows patients to digitally communicate with their providers, access test results, receive health education and manage medications. Your EHR contains much of your most sensitive health information, and you’re never required to share your medical records with anyone outside of your healthcare provider.
However, if you haven’t already given permission to a caregiver to access your EHR, now may be a good time to consider sharing access to this information. Sharing your health information will require you to authorize the caregiver as a medical power of attorney or be given authority as your health care proxy. Your palliative care team can help guide you through the things to consider and legal documents required for this process.