This month’s blog post is about accessing your medical records to help you advocate for yourself. The authors are PAS CEO Katrina, our USA and Australian based Support Group Hosts Julie and Martine and Bettina whose recent seminar about her research and constructive access to care for patients in Denmark is also available in our Shop. We know advocating for yourself can be difficult when you feel unwell but maybe some of the points in the blog post will help build confidence to meet the challenges.
By Katrina Burchell, Julie Wichlin, Martine Cotton, Bettina Borre Buhl.
Why Access Your Medical Records?
Understanding your medical history is a powerful tool for taking control of your health. Having access to your complete medical records allows you to:
- Make informed decisions about your care
- Track changes in your health over time
- Ensure your treatment aligns with your current needs
- Participate actively in discussions with healthcare providers
This is especially important for conditions like Pernicious Anaemia, where symptoms may persist even when blood test results appear normal. Small changes over time can provide critical clues about your health status.
Many of us who volunteer for the Pernicious Anaemia Society—or who advocate for better diagnosis and treatment—have learned the importance of accessing and reviewing our medical records firsthand. Constantly checking, reviewing, and questioning has not always made us popular with healthcare professionals, but it has led to better understanding and treatment. It has also driven us to help others by sharing information.
Informed Decision-Making
Your medical records provide a comprehensive history of your health, including diagnoses, treatments, medications, and test results. Having this information allows you to:
- Make informed decisions about your care
- Discuss options with your doctor
- Understand the potential risks and benefits of different treatments
Improved Communication
A clear understanding of your medical history allows you to communicate more effectively with your healthcare providers. You can:
- Ask informed questions
- Express your concerns
- Ensure your healthcare team is aware of all relevant information
We recognize how difficult this can be when you feel unwell. That’s why our helpline, helpdesk, and support groups recommend:
- Keeping a diary or journal of symptoms
- Taking a friend or family member to appointments for support
- Asking doctors to repeat or put responses in writing for clarity
- Requesting research evidence when a doctor makes a sweeping statement that contradicts your own findings
For example, many healthcare professionals have told our members that their B12 levels are “toxic.” Each time, we advise our members to ask their doctor for research supporting this claim, as the Pernicious Anaemia Society would love to review it. Without exception, no such research has ever been presented.
Detecting Errors
Medical errors happen. By reviewing your records, you can identify and correct inaccuracies such as:
- Incorrect diagnoses
- Medication errors
- Misreported test results
Correcting these mistakes can prevent future health complications and ensure you receive appropriate care.
Empowerment
Accessing your medical records empowers you to take control of your health. It allows you to be an active participant in your care rather than a passive recipient. This often leads to better health outcomes and a greater sense of ownership over your well-being.
Understanding your medical history helps you advocate for yourself in healthcare settings. You can:
- Confidently discuss your needs
- Challenge incorrect assumptions
- Ensure your voice is heard
The number of patient concerns raised with the Pernicious Anaemia Society highlights just how much time is wasted due to delayed diagnoses, inadequate treatment, and dismissal of symptoms related to Pernicious Anaemia and B12 deficiency.
Continuity of Care
If you see multiple healthcare providers, visit different hospital departments, or move to a new location, having access to your medical records ensures continuity of care.
Understanding Test Results: Beyond “Normal” vs. “Abnormal”
When reviewing test results, pay attention to:
- Values outside the normal range – These require further investigation.
- Gradual trends within the normal range – Even slight shifts can be significant.
- Patterns over time – Subtle changes may indicate developing issues.
Managing Complex Conditions
Managing conditions like Pernicious Anaemia can be challenging. You may face:
- Healthcare providers with limited expertise in your condition
- Difficulty accessing certain tests
- Variations in testing availability based on location
- Challenges with getting privately sourced tests recognized
These are real and common issues faced by our members. Despite these obstacles, being proactive with your medical records can lead to more productive discussions with your healthcare team.
The Importance of Being an Informed Patient
The authors of this post would all be considered “informed patients.” Many doctors appreciate constructive discussions with well-informed individuals, and strong patient-doctor relationships often lead to better care. However, we have also encountered healthcare professionals who are less open-minded—those whose training, daily experience, or even ego may prevent them from engaging with patients in a thoughtful, empathetic way.
Understanding your health conditions and treatment options enables you to ask more informed questions and have more productive conversations with your doctor.
For those dealing with Pernicious Anaemia, the lack of expertise in this area can make diagnosis and treatment frustrating and overwhelming.
Tips for Becoming an Informed Pernicious Anaemia Patient
- Do your research – Use reputable sources to learn about Pernicious Anaemia and B12 deficiency. Be cautious with unverified online sources, as some doctors may dismiss information from Google or social media.
- Ask questions – If a doctor provides conflicting information, ask for supporting research or reach out to the Pernicious Anaemia Society for guidance.
- Track your health – Keep a record of your medical history, medications, test results, and symptoms.
- Advocate for yourself – Don’t hesitate to bring someone to appointments for support. Fatigue, brain fog, and anxiety are common symptoms, so it’s reasonable to ask for information to be repeated, take notes, or have a companion with you.
Accessing Medical Records in the Digital Era
With the rise of patient portals, healthcare systems increasingly provide access to medical records online. Knowing how to retrieve and interpret this information can make a significant difference in managing your care.
The Pernicious Anaemia Society has compiled a guide for accessing medical records with general tips and advice and particular details for some countries, including:
- England, Scotland, Wales, and Northern Ireland
- Australia
- The United States of America
- Denmark
Members of PAS can follow this link for A Practical Guide to Accessing your Medical Data in various countries here: https://pernicious-anaemia-society.org/articles/guide-for-patients-accessing-your-health-records/
If you have knowledge about patient access to medical records in other countries, or know someone who does, we would love to hear from you!
Final Thoughts
While healthcare providers are there to help, you are your best advocate. Taking the time to request and review your medical records not only improves the quality of your healthcare but also strengthens your role as an active participant in your well-being.
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