Tips for Maintaining a Personal Health Record with Sjogren’s Syndrome

Tips for Maintaining a Personal Health Record with Sjogren’s Syndrome

Sjogren’s syndrome is an autoimmune disease, in which the body’s immune system mistakenly attacks the secretory glands, such as the tear glands and salivary glands. The disease can appear either as primary Sjogren’s syndrome, which occurs without other autoimmune diseases, or secondary Sjogren’s syndrome, which occurs in people who already have another autoimmune disease like rheumatoid arthritis.

Sjogren’s syndrome is rare and its symptoms can be confused with other conditions. For these reasons, it presents several challenges in diagnosis and treatment, and keeping good personal health records (PHRs) are important. Here’s what you need to know about PHRs, and how they can help serve as a ready reckoner when needed.

Why do I need a PHR?

Your healthcare provider will most likely maintain an electronic medical record that resides with the hospital or clinic. A PHR is your own collection of documents pertaining to your medical history. A PHR can be a physical collection of papers, or a collection stored electronically on a smartphone or tablet.

PHRs can be extremely valuable when you want to switch healthcare providers or should you need to seek treatment during travel. They can also be useful as a quick reference for first responders when you are faced with a health emergency situation at home or at work.

What kinds of PHRs are available?

PHRs are generally of two kinds: standard (or standalone) and tethered.

Standard PHRs are made and curated by the patient, whereas tethered or connected PHRs are linked to a healthcare provider’s secure online portal. The term tethered PHR is often used interchangeably with the term “patient portal.”

What kind of a PHR should I opt for?

Both standalone PHRs and tethered PHRs have the same purpose: to offer an easy way to access your medical history. Choosing one entirely depends on how you want your medical information to be handled. It is a good idea to use a mix of both, as tethered PHRs may not always be accessible offline.

With standard or standalone PHRs, the onus is on you to collate all relevant information. Your doctors have access to the PHR only if you present it to them voluntarily. You will need to be diligent enough to keep the PHR updated regularly, but this PHR allows you to add details beyond those your doctor might report, like diet, supplements and exercise choices so you can track what might be working for you. However, if you use an electronic means of creating a standard PHR, it may not be able to interface with your healthcare provider’s system. This limits its usefulness, and should be checked before making your choice.

A tethered PHR or a patient portal is updated from the healthcare provider’s end, meaning the information is likely always up to date. Depending on your healthcare provider, patient portals can offer more than just a snapshot of your medical history. For example, you may get access to tools that can help make meaningful analyses of your laboratory reports and trends over time, and schedule clinic visits and secure email exchanges with your doctor.

The Office of the National Coordinator for Health Information Technology (ONC) notes that a tethered PHR connected to a patient’s legal medical record is protected under the Health Insurance Portability and Accountability Act (HIPPA) Privacy Rule.

What information should be included in a PHR?

Irrespective of whether you opt for a standalone or tethered PHR, make sure it contains the following information:

  • your name and contact details, including your address, phone numbers, and email address
  • information about people to contact in case of an emergency. such as family, friends, and caregivers
  • information about your health insurance, including your current plan and contact details for your agent
  • information about your symptoms, such as the time when you first started noticing them, their severity, and how often they occur
  • information about doctor visits to date and their outcomes
  • details about the results of diagnostic tests, such as blood tests and lip biopsies
  • a list of allergies that you know can potentially trigger Sjogren’s symptoms
  • information about medications you have been taking and how effective they have been
  • measures you have taken to control symptoms, such as dry eyes and dry throat
  • Your family history of Sjogren’s syndrome or other autoimmune diseases
  • signs of depression or anxiety that you may have experienced
  • other information you think could be relevant

Should I pay to maintain a PHR?

If you are maintaining your own standalone PHR, most likely you wouldn’t have to pay unless you are using an electronic service that might charge a one-time fee or a yearly subscription.

For tethered PHRs and patient portals of hospitals, your healthcare provider may cover the costs or charge a nominal yearly fee. Check with your healthcare provider for access costs.

 

Last updated: Nov.12, 2019

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Sjogren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.