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One question often asked is how a person can effectively advocate for their healthcare needs. VVFF Founder, Kristal Kent, provides tips and insight to help patients better advocate for their medical needs. In addition, Kristal interviewed Dr. Danny Sands, Co-Founder of Society of Participatory Medicine on the topic of "Partnering with Patients" encouraging patients to be a proactive member of their treatment team, which improves a patient's ability to actively engage in treatment and advocate on their own behalf. You can find this video interview at the end of the tips provided below:

  • Proactive Patient Preparedness: Research online what your state, province, region and/or country has in place to protect Patient Healthcare Rights. Also, inquire of ALL your doctors/medical facilities if they have a “Bill of Patient Rights” or a “Healthcare Rights Policy” and ask for a copy. Identify if the medical office or Healthcare Facility has a Patient Advocate on site. Sometimes Patient Advocates may be called a client or Patient Rights Officer or a Patient Experience Representative or a Patient Advocate Coordinator etc. If possible, identify who the Medical Director of the Clinical Departments you receive treatment from.

  • If you experience any patient rights violation, put it in writing and submit it to both the Patient Rights Advocate and Department Director.

  • If you are experiencing difficulty or barriers to healthcare or obtaining referrals or ordering tests, when possible, bring someone with you to your appointments or ask someone to be on site when you have telehealth appointments. If a medical provider refuses to order tests or put in referrals, requests that the doctor document in your medical notes your request and the medical provider deciding not to do so.

  • If you are relaying to your doctor how your medical condition is impacting your ability to complete activities of daily living, and the doctor does not note this in your clinical notes, follow up by either messaging your doctor through the online patient portal or type up a letter. At your next appointment, ask the staff to submit your letter in your medical chart. Chronic Illness Hack: Writing letter detailing how your medical condition impacts your daily living. It can be daunting and overwhelming. You can use a Talk to Text app on your smart phone, iPad, or Computer to dictate your letter. Then copy and paste what you dictated it to a word document or copy and paste it into the healthcare messaging system.

  • During your health appointments, it can be overwhelming to recall everything discussed/addressed with your medical provider. To circumvent this, you may want to use an app like iTalk or something similar apps for smart phones. iTalk is a tool you can use to record your medical appointments without videotaping. It works like an old school tape cassette recorder. You can inform your medical provider, that due to Brain Fog, TBI, PTSD etc., you are using an app to help recall what was discussed during your medical appointment. Using an app like iTalk or a similar app is also helpful, in the event an issue arises, in which you experience a patient rights violation or experience medical gaslighting etc. Further, when you identify with your medical providers you are using an app to support your medical conditions, brain fog or disability, a provider will be cognizant of their approach and delivery of information.

  • Finding the right doctor takes time but some tools are in place to help you find a medical provider who will respect you, your patient rights, and treat you as an equal member of your treatment team. One resource is your online communities and initiating discussions of which doctors other patients recommend in your medical community. In addition, due to expansion of telehealth this may allow you, depending on your health insurance plan or healthcare system, to access specialists, whose practice is far from where you live, a different state etc., who are more knowledgeable and supportive. Finally, there are tools you can use to search for a medical doctor by specialty and Patient Reviews. Examples:,,, Angie’s, and similar sites are good resources, that are driven by patient reviews, of doctors in which patients received medical care from. These resources help you find a good doctor in your area based on patient reviews. The key here is using websites and resources that provide reviews of medical providers by patients versus reviews of doctors by their peers, colleagues, staff or medical facility, etc.

  • For additional information on proactively advocating for your health care needs, along with tips on how to be an equal member of your treatment team, watch the video below, where Kristal Kent teams up with Dr. Danny Sands, to discuss the concept of Patient Participatory Medicine.

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