Health Records and Information Sharing: A Guide to Who Can See Your Data

Maybe the specialist’s office asked for your scans, but the new clinic says your file never arrived. Maybe a spouse or adult child wants to help you keep track, and you are not sure what they are allowed to see. Those moments are where health records and information sharing stop being an abstract idea.

This guide covers requests, patient portals and written permission when records need to move between offices. This guide uses the same steps throughout. Get a copy, check it, fix errors, decide who may see it, send the right pieces, and track what arrives. This guide walks you through those steps in order.

Connected Care Guide is a publication. These guides are for education and do not replace care from a qualified professional.

Step 1: Get a copy and read what is actually in it

You start where you are now: you need to know what your file says before anyone else relies on it. Ask the office for a copy of your own record, in writing, and write down the date you asked.

A copy is only useful if you read it. Look at your medicine list, allergies, diagnoses, recent tests and visit notes. Mark anything that looks wrong or old.

If you have older records from several places, the Get Medical Records Online: Old Records guide covers how to ask for them. Once the copy is in hand, you are ready to check it.

Step 2: Fix errors and make sure the right file is matched to you

Now you check the details. Look for a wrong medicine, an old diagnosis or a missing allergy. Also confirm that your name, date of birth, address and phone number match at each office.

Matching matters. A 2004 international consensus conference of 53 informaticians agreed that comprehensive computerised primary care records are an essential part of any national health information strategy.

If your identifying details differ between offices, the Patient Matching Questions guide lists what to compare. Then move on to who can see the file.

Step 3: Decide who else can see your information

This is the step where family members often come in. A spouse, adult child or caregiver may want to help you read results or book visits. How they get access depends on the office and the portal.

Ask the office how it lets a family member help. Ask which form it uses and what the form covers. A 2007 review described technologies designed to enforce disclosure policies and audit past access to records at the database level, so ask whether your office logs who opens your file.

At a visit, a helper’s role should be clear to everyone. The Support Person at a Medical Visit guide covers roles and note-taking.

Step 4: Send the right pieces to the next clinician

When a referral asks for imaging, ask whether the specialist needs the image file, the report or both. Send what is requested, and confirm that the specialist received it.

Specialty systems can differ too. A 2014 comparison of three electronic reporting systems for thyroid cancer found one covered 117 of 120 fields that the American Thyroid Association recommends, while another covered 21 of 32 intraoperative fields. Ask your specialist whether their system uses a disease-specific form.

Use the Specialist Referral Packet guide to assemble the set. If nothing shows up, the Records Did Not Arrive log helps you chase it.

Step 5: Track results and follow-up after the visit

Once the records have moved, the question changes: who receives each result, and who tells you what happens next? Many people assume this is automatic. Do not assume it is automatic; ask every time.

Interoperability is still developing. A 2024 systematic review of 14 studies found that every study reported clinical benefits from the approach it examined, and it said more real-world analysis is needed before one approach can be recommended. Treat connected systems as helpful, not as a guarantee that results travel.

After a hospital stay, the Hospital Discharge Follow-Up guide lists what to confirm. If a visit slips, the Specialist Visit Delayed guide shows how to keep the file organized.

Step 6: Ask the rules questions and set your next step

You may have heard terms like HIPAA, confidentiality, the “five C’s,” or the “four limits” to confidentiality. This guide does not list those rules. Ask the office which privacy rules and procedures apply to your request. For the federal HIPAA rules themselves, the HHS HIPAA page is the place to start.

Use these questions on the phone or at the front desk:

1. Which privacy rule governs the records you are sending or sharing?
2. Exactly which information will be included in this request?
3. What form do you need from me to share with a family member?
4. Which notes, if any, are kept separate, such as mental health notes?
5. Who on your staff can answer a question about this request, and how do I reach them?

Your next step

1. Request a copy of your own record in writing and note the date.
2. Read the copy and mark anything wrong, missing or old.
3. Ask each office who may see the file and which form they need.
4. Send the referral packet with the image file and report, and log the confirmation.
5. Ask who receives each test result and who will tell you the next step.

Every guide on this topic

Getting and checking your copy

• Get Medical Records Online: Old Records: asking for older files from several places.
• Get, Check, and Share Health Records: getting, checking and sending records for care.
• Health Record Fees, Timing, and Format: questions about cost, timing and file type.
• Records Did Not Arrive: Confirmation Log: a dated log for missing records.
• Correct an Error in Your Health Record: fixing a wrong entry before a visit.
• Personal Care Timeline: a dated record across several teams.
• One-Page Health Summary for a New Team: a short summary to bring to a new clinician.

Matching, family and privacy

• Patient Matching Questions: identifying details that help offices link your file.
• Proxy Access to Health Records: questions before a helper gets portal access.
• Support Person at a Medical Visit: roles, privacy and note-taking.
• Caregiver Handoff Note: preparing a note for a helper to bring.

Starting with a new clinician or specialist

• First Doctor’s Appointment: What to Say: what to say and expect at a first visit.
• Preparing for a Doctor Appointment: getting ready for any visit.
• Telehealth vs. In-Person Cost: insurance, prices and questions.
• Telehealth or In-Person Visit Preparation: choosing the right type of visit.
• Telehealth Accessibility and Setup Questions: setup questions before a remote visit.
• Second Opinion Without Referral: insurance and Medicare questions.
• Preparing for a Second Opinion: the question, the record and the deadline.
• Specialist Scope Question: checking the specialist fits before the first visit.
• Focused Referral Question: writing one clear referral question.
• Care Team Roles: Primary Care and Specialists: who does what across your team.
• Changing Specialists: Clean Handoff: records questions when you switch.
• Pediatric to Adult Specialty Care: a transition questions map.
• Care Conference Questions: roles and notes for a team meeting.

Referrals, prior authorization and images

• How Medical Referrals Work: steps and timing.
• Specialist Referral Packet: notes, tests, images, medicines and contacts.
• Referral and Prior Authorization Tracking Sheet: a two-column tracking sheet.
• Referral vs. Prior Authorization: two different navigation steps.
• Sharing Medical Images With a Specialist: the image file and report are different.

Results, follow-up and who to contact

• Track Test Result Information: who receives each result.
• Hospital Discharge Follow-Up: medicines, pending tests and warning instructions.
• Specialist Visit Delayed: keeping records organized during a delay.
• Telehealth Follow-Up After a Specialist Visit: preparing a remote follow-up.
• Care Team Contact Maps: who handles refills, results and urgent questions.
• Which Care Team for Nonurgent Questions: routing a nonurgent question.

Connected Care Guide is a publication. These guides are for education and do not replace care from a qualified professional.

By Connected Care Guide Editorial Team