How to be your own health advocate

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Self advocacy is about taking a proactive approach to all stages of health and illness: prevention, diagnosis, treatment, and recovery. When people take an active role in their care, research shows they fare better both in satisfaction and in how well treatments work. In this talk you will learn how to develop the skills to be a good self-advocate, communicate effectively with your doctors, evaluate the latest health news headlines and find the best health information online.

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How to be your own health advocate

  1. 1. How To Be Your Own Health Advocate Marie Ennis Europa Donna Ireland The Irish Breast Cancer Campaign
  2. 2. Health AdvocacyHealth advocacy encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public. Advocates support and promote the rights of the patient in the health care arena, help build capacity to improve community health and enhance health policy initiatives focused on available, safe and quality care. Wikipedia
  3. 3. It’s important that we beself advocates for ourhealth because who betterthan us knows what weneed? ~ Jan
  4. 4. I believe being your own advocate meansmoving past the paralysis of bad news intoactive participation. If we don’t participate,our voice isn’t heard and decisions are madewhich may not be the best for our physicaland/or emotional health. Once we activelyengage in our own health care, we starteducating ourselves, asking questions anddemanding answers, and making hardchoices. Not only are better decisions made,but we take back some control over our lives.~ Debbie
  5. 5. You have to take responsibility forunderstanding the risk and benefits forany proposed treatment. You can’taccept doctors recommendationsblindly. My oncologist initiallyrecommended ‘a moderate course’ ofchemotherapy to treat my breast cancer.But after further testing and a carefullook at the benefits versus risks we bothagreed the risks and benefits were aboutequal. Therefore, I opted out. I think Imade the right decision. ~ Lisa
  6. 6. Engaging In Your HealthcareWe have to participate actively and knowledgeably in our care if we are to realize its benefits ~ Jessie Gruman"I am constantly impressed with the tools that are now available to treat diagnoses that – even a decade ago – were death sentences. But what is widely overlooked about these advances is the extent to which their success depends on our participation. We have to show up. We have to do the exercises. We have to take the pills.We have to avoid the risks – or we don’t realize the benefit."Delivered at the Institute for Clinical Systems Improvement’s Colloquium on Health Care Transformation: “Thriving in an Era of Health Care Reform: Advancing Accountability, Affordability and the Patient Experience,” St. Paul, Minnesota,May 18, 2011 http://e-patients.net/archives/2011/06/jessie-gruman-at-icsi.html
  7. 7. Healthcare Engagement Steps1. Ask questions2. Read accurate health information3. Maintain your own health records
  8. 8. 1. Talking To Your DoctorA. Ask QuestionsB. Be PreparedC. Communicate Clearly
  9. 9. The most important ingredient tobeing a successful advocate is toembrace your right to ask as manyquestions as necessary and as oftenas necessary until you understandall your options. There are neverany “stupid” questions ~ Cara
  10. 10. A. Ask Questions• What is my condition?• How was it caused?• What treatment do you propose?• Are there other treatment options available?• What is the expected course of this illness if I don’t have this treatment?
  11. 11. Ask About Your Medication• How does this medication work?• Should I take it with or without food?• Can I take it with other medications?• Any possible side effects?• Do I need to follow any restrictions (alcohol, driving)?• How long will I need to take my medicine?• What should I do if I miss a dose?
  12. 12. B. Be Prepared• Research your symptoms• Make a list of the most important issues to take with you• Mention your relevant family history• Take notes• Ask someone to come with you to your doctor visits
  13. 13. C. Communicate Clearly• Ask your most important • Ask the doctor to explain questions first, in case the what he or she said in terms doctor runs out of time you understand• Be clear about whats • Repeat back in your own bothering you words what you think the doctor meant• Be honest about how much you really smoke, drink, or • Tell your doctor if you need eat; whether you’ve stopped more information taking your medication
  14. 14. 2. Accurate Knowledge• Knowledge is the key to personal health advocacy• Your knowledge about your illness, and how you use this knowledge, can make a difference in how well you live.• Everyone can find the information they need. If you don’t know where to begin to look or if you are not sure you can do it yourself, you probably do have friends or relatives who can help find information
  15. 15. Behind The Headlines
  16. 16. Fact Or Fiction?• Don’t just read the headline. Read the original study report, and look for details about the research done to support this new theory.• Was the study in humans? Often these tests will not have been tried on humans yet. What works in animals does not always have the same effect on people.• How big was the study? Has it been reviewed by experts?• Look at the authors credentials. Are they respected in their professional field?• Does the story make a drug sound like it’s available at the local pharmacy when it’s really only in an early-phase trial?
  17. 17. Internet• A lot of good information online and a lot of false information• Ask your doc what sites s/he recommends• Discuss findings with doctor• Important to question your sources• Trust your judgment - too good to be true usually means it is
  18. 18. How To Evaluate A Website• Who manages this information? Check the "About Us" section• What is the original source of the information that they have posted? Published in research journal?• How is information reviewed before it gets posted? Peer reviewed?• How current is the information? Online health sites should show the date of publication and last review
  19. 19. 3. Personal Health RecordCan you get copies of your records/treatmentsummaries?As you move forward, ask for copies of reports,test results etc. while youre in the doctorsoffice
  20. 20. How To Keep Your PHR• File folders• Three-ring binders• Memory stick• Internet medical record services• Both electronic and paper records is a way to have a back-up set of files
  21. 21. I would suggest keeping copies of all.of your records at home and/ormaking an Excel file with dates,main points, changes in medications,major tests, etc. Plus keeping acomputer list of all of yourmedications. I also make a smallcopy of these lists to carry in my bagand both my husband and I carrycopies of each others lists. ~Lois
  22. 22. What To Include• Personal Information• Family Medical History• Your Past Medical History• Next of Kin Contact Details• Health Insurance Details• Family Doctor Contact Details• Blood Type• Allergies• Medication (list any drugs and dosage)• Consultant Reports• Routine Test Results
  23. 23. In conclusion….“The end result of advocacy is empowerment. Sweet empowerment. Advocacy makes you more than just a number or statistic; you become a force to be reckoned with, a questioner. And there is great comfort in answers that make sense to you” ~ RennRemember, your best advocate is you!

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