PHA Patient Self-Advocacy Toolkit

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A helpful resource from the Pulmonary Hypertension Association, providing information and tools for individuals who are experiencing unexplained symptoms and need to work with a doctor to figure out what’s wrong.

Transcript of PHA Patient Self-Advocacy Toolkit


    The Patient Self-Advocacy Toolkit is a project of the Pulmonary Hypertension Associations Early Diagnosis Campaign.The Patient Self-Advocacy Toolkit is a resource of the Pulmonary Hypertension Associations Early Diagnosis Campaign.

  • P a t i e n t S e l f - A d v o c a c y T o o l k i t | 1

    Copyright 2015 Pulmonary Hypertension Association

    Pulmonary Hypertension is a rare, hard to diagnose illness, and many of our patients experience periods of uncertainty preceding their diagnosis. PHA understands the frustration, fear and uncertainty that come with having an undiagnosed illness or unexplained symptoms, and wants to help.

    This Toolkit has been designed to help you be your own best advocate as you navigate the complex and sometimes difficult road to diagnosis. We'll show you how to speak up for yourself, how to ensure that your perspective is heard and that your questions are answered, and how to take control of your healthcare journey.

    WHO is this Toolkit intended for?

    The Patient Self-Advocacy Toolkit is intended for anyone facing unexplained symptoms and/or an undiagnosed illness. While this Toolkit was designed for you - the patient - your family and friends might find it helpful as well.

    WHAT can I expect from this Toolkit?

    This Toolkit will provide you with strategies, tips and best practices to help you advocate effectively. It also includes forms and worksheets that you can use to keep track of your important health information. We hope that it becomes a "go-to" resource for you - and maybe even your healthcare team.

    HOW should I use this Toolkit?

    We recommend that you read through as much of the Toolkit as possible. We've provided printable versions of useful forms and worksheets which you can take with you to your healthcare appointments.

    Table of Contents

    2 Be Organized

    3 Be Informed

    6 Be a Partner

    9 Be Sure Youre Covered

    10 Be in Control

    Forms and Worksheets

    Highlights key points and takeaways

    801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004

    Learn more about PHAs Early Diagnosis Campaign at:

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    Copyright 2015 Pulmonary Hypertension Association

    Be Organized:

    Organizing your medical information is always a good idea, and can help you and your loved ones access critical information in an emergency. Good records will also help to ensure that you and your healthcare team have all the information needed to manage your care.

    Weve prepared the forms below to help you capture your most important health related information. You can find these print-ready forms and worksheets at the end of this Toolkit.

    Medical Information Summary: Use this document to summarize your personal information, emergency contacts, medications and essential health information.

    Healthcare Contact List: This form will help you keep track of all of your healthcare providers information in one place. Share this list with your primary care provider and any specialists you see so they can keep each other informed about diagnoses, changes to your health, procedures and test results.

    Medication Log: Use this form to record all medications you take, both prescribed and over-the-counter medications. Note why each medication was prescribed or recommended - even herbal supplements and vitamins. Be sure to update this list every time you start or stop a new medicine. Include medicines you have stopped taking in the last year.

    Insurance Information Form: Use this document to keep a record of your current healthcare insurance information.

    Family History Record: Family history can be useful in helping your healthcare team identify conditions for which you may be at risk. Use this worksheet to record important medical information about your closest blood relatives.

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    Copyright 2015 Pulmonary Hypertension Association

    Be Informed:

    Are you turning to the best resources for your healthcare and medical information? Finding the information you need to be an educated and empowered patient can be a challenge, and many people find the sheer volume of information available to be overwhelming.

    The materials and resources in this section are designed to help you evaluate the quality of the information you find online and to help point you in the right direction.

    Finding Credible Healthcare Information Online

    Thanks to the internet, you have access

    to more information than ever before,

    but is all this information credible?

    Sometimes, its hard to know.

    Information is only as good as its source, and differentiating good from bad information is sometimes a matter of judgment. Data, opinions and recommendations can vary even among credible sources. The following questions will help you critically evaluate the healthcare information you find online.

    Where is the information or data being


    What does the About Us page tell you about the organizations mission and objectives?

    What is the purpose of the site? Who is the site intended for? How might funding influence the research or

    other information presented on the site?

    Is the source credible?

    Ask yourself if the information you are reading is likely to be unbiased, balanced and without hidden motives. Here are some particular points to consider:

    Who are the authors of the information or data presented?

    Do they have appropriate expertise? Can they speak with authority? What are their credentials?

    Is the data or information based on research and scientific evidence? If yes, can you determine who funded the research? Were articles peer reviewed?

    Can you differentiate between opinions and facts?

    If the site is presenting content collected from other sources, have they identified the original sources?

    Is the data current? If the information doesnt match other research

    on the topic, is it supported by multiple credible sources?

    What can a website address tell you?

    A website address can tell you a bit about the organization that owns and operates the website.

    ".edu:" Published by an organization affiliated with an educational institution

    ".org:" Published by a not-for-profit organization, such as the Pulmonary Hypertension Association

    ".gov:" Indicates that the website is run by a government agency

    ".com:" Generally means the site belongs to a commercial or for-profit organization

    Are there any red flags?

    Sometimes, its good to be a skeptic especially if you see these warning signs:

    Lack of appropriate expertise or credentials Data that seems biased or in conflict with

    the credible research Data that is outdated Information that seems too good to be true Overt product sales pitches Facts with no references

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    Copyright 2015 Pulmonary Hypertension Association

    Seeking a Second Opinion

    Sometimes it takes a fresh pair of eyes to see a situation in a new way. Second opinions can help you make more informed decisions and to take greater control of your healthcare journey.

    Decisions about your healthcare are among the most important you'll ever make, and it's natural to want to have as much information as possible. Still, many of us worry about offending our doctors or health team by asking for a second opinion. Rest assured, most healthcare professionals will understand your desire to be well informed and will support your desire to get a second opinion. Many will even be happy to help you get one. When you ask for a second opinion (or third), you are simply asking for another perspective on your health issues and options. This makes you a more informed consumer.

    Why and When Should You Seek a

    Second Opinion

    Requesting a second opinion doesnt mean you dont trust your doctor. Here are some reasons you may want to consider getting a second opinion:

    Based on their training, diagnostic tools, and experience, healthcare professionals may have varying approaches to diagnosis. When faced with a hard-to-diagnose condition, it may become necessary to consult a variety of specialists.

    No two healthcare providers have the exact same approach. They may apply different types of treatment approaches and styles. Some favor more "wait and see" conservative approaches, while others prefer a more aggressive strategy. By seeking a second opinion, you increase your understanding of the options available to you.

    Talking to Your Healthcare Team about Getting a Second Opinion

    Telling your healthcare team that you would like to seek a second opinion might be uncomfortable, but dont let that hold you back. After all, it's your health that's at stake. Heres what you should do when asking for a second opinion:

    Be honest: Dont hide your desire or intent to get a second opinion. Your healthcare team may be able to recommend specialists and may even be able to coordinate the sharing of your medical records.

    Be respectful: Keep in mind that, like you, your healthcare team is committed to your health you are all part of the same team. Getting a second opinion shouldnt be seen as severing ties, so manage the process diplomatically.

    Be clear and direct: Explain that getting a second opinion is important to you, and will enable you to feel confident about the decisions youll be asked to make about your healthcare.