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Empowering Patients: A Guide to Chronic Illness Patient Rights and Path to Justice

Imagine standing at the crossroads of your healthcare journey, armed with knowledge but also weighed down by the complexities of the system. This is the reality for many Infection Associated Chronic Conditions ( IACC) patients. In 1997 the Advisory Commission on Consumer Protection and Quality in the Healthcare Industry was established to guide improvements in healthcare quality and consumer protection. This initiative led to the development of the Patients' Bill of Rights, designed to bolster patient confidence, enhance the patient-healthcare provider relationship, and emphasize the active role of patients in their healthcare. For those suffering from chronic illnesses, especially those with invisible disabilities, particularly in emergency room scenarios, it is crucial to be aware of and advocate for these rights.

As we explore the intricacies of these rights, let's remember that this is more than just policy, it's about reclaiming our dignity, understanding, and advocacy in the face of adversity.

The Patients' Bill of Rights and Responsibilities

The Patients' Bill of Rights covers eight fundamental rights and responsibilities crucial for all patients, with specific relevance to those with Infection Associated Chronic Conditions in emergency settings.

I. Right to Information

Patients with Infection Associated Chronic Conditions are entitled to clear, accurate information about their healthcare plans, professionals, and facilities to make informed decisions. Essential information includes accreditation, provider qualifications, clinical guidelines, and patient satisfaction ratings.

II. Choice of Healthcare Providers and Plans

It's vital for these patients to have access to a range of healthcare providers and plans, ensuring quality care. This includes access to specialists and comprehensive care for chronic conditions.

III. Emergency Services Access

Patients must have immediate access to emergency services as needed, with emergency departments adhering to a "prudent layperson" standard, providing coverage without prior authorization if life is at risk.

IV. Involvement in Treatment Decisions

These patients have the right and responsibility to be actively involved in all healthcare decisions, including representation if they are unable to make decisions independently.

V. Respect and Nondiscrimination

Every patient deserves respectful, non-discriminatory care, irrespective of race, ethnicity, disability, or other factors.

VI. Confidentiality of Health Information

Patients have the right to private communication with healthcare providers and protection of their health information, including access and amendment rights to medical records.

VII. Process for Complaints and Appeals

Patients are entitled to a fair process for resolving disputes with health plans and providers, with access to an independent review system.

VIII. Patient Responsibilities

In a rights-focused healthcare system, patients are encouraged to engage responsibly, including maintaining healthy habits and understanding their health plan coverage.


a judge with gavel in court
Seeking justice as a patient , may come with filing a lawsuit in court

A Path to Justice for Infection Associated Chronic Conditions Patients and Caregivers

Knowing your rights as outlined in the Patients' Bill of Rights is essential for Infection Associated Chronic Conditions patients. Equally important is understanding how to respond when these rights are infringed upon. This guide aims to empower patients and caregivers by outlining steps to take in the face of healthcare rights violations.

Recognizing Violations

Begin by fully understanding the specific rights in the Patients' Bill of Rights for Infection Associated Chronic Conditions. Be familiar with each right and standards of care for your conditions to accurately identify violations. Document Everything! Maintain detailed records of interactions with healthcare providers and facilities, including names, dates, incidents, and communications about your healthcare. If you are legally and physically able, take photos, audio, and video recordings.

If at all possible never attend any appointment or hospital visit alone. It will be crucial to have a witness when seeking justice and it can help avoid experiencing malicious incidents altogether.

Addressing the Issue with the Provider

a. Clear Communication:

Initiate a respectful dialogue with the involved healthcare provider or facility, clearly stating your concerns and the specific violations encountered. Only engage in person if emotionally and psychologically prepared, considering trauma and potential Post-Traumatic Stress Disorder ( PTSD ) from the incident.

b. Seeking Resolution:

Request a clear resolution or action plan to rectify the situation and prevent future violations. Request written confirmation of any agreements or refusals to address the issue. Be prepared for potential resistance or dishonesty from medical providers.

Filing a Formal Complaint

a. Contacting Hospital or Facility:

This is where you formally file a complaint with the hospital or facility's patient relations or patient experience office about a doctor nurse or medical staff.

Reach out to the hospital or facility's patient relations department or patient experience office via phone or email to formally file a complaint regarding the violation. Note that these offices work for the hospital. They tend to not actually be helpful in getting issues handled in a fair or just way, and may flat out lie and gaslight you. 

If you are in a one party consent state I highly recommend quietly recording every conversation. Every time you attempt to call, record! I do this by opening up a Zoom meeting and hitting record so I'm free to use my phone for the call. Even if they dont answer the phone, record the call and document your attempts to rectify the issue. If you do not plan to be anonymous, be sure to give the correct specific personal identifying information such as name, date of the incident, and request they correspond in writing that they received the complaint. It may help to open your digital hospital records to have the details such as date and name of doctors or nurses on hand. Ask them to follow up in writing their official judgment to an investigation that you are insisting they initiate. Request a specific deadline for their response, along with your email and phone number so they can't pretend the conversation didn't happen or drag it out until it reaches statute of limitations.

I cannot reiterate enough that the overwhelming majority of internal hospital complaint measures are NOT for helping the patient get justice. It is to protect their staff and deescalate the anger a patient feels after being wronged.

Do not tell them any details that may weaken your claim of harm by staff to outside entities. Do not be surprised if they try to rush you off the phone without asking for any details at all. If this happens, you absolutely can call back. Remember, if you can, record everything! Even if you escalate the issue to director level or Diversity Equity and Inclusion office, which you can ask for, do not let your guard down.

b. State Medical Board:

File a complaint with your state's medical board, detailing the violation and related circumstances. You can do this via phone, letter or online. This process usually begins with filing a brief complaint on the website. In my experience in Virginia, the online complaint form allowed a decent amount of space to give light details and upload photos. The Virginia Department of Health Professions website states it cannot guarantee anonymity for complaints submitted anonymously. I'm not sure if that is the same for each state, but know that there is no absolute. There are some tips on how to make the process as anonymous as possible while still submitting a formal complaint. Usually video evidence is not available to submit at this portion. You should get an auto reply that your complaint was received via the email you supplied shortly after you submit the form online. Usually within a day or so. A few weeks later an investigator should be assigned to your case and email and or call you to give you an opportunity to add more details and video evidence via their email address. They may also give you the opportunity to request a phone interview with them to explain in more detail the incident filed in the complaint. Keep in mind this is specifically about this specific complaint. If you chose to file a complaint about that specific doctor and not the facility, focus only on what that doctor did. You can also file complaints against multiple individuals in that incident. It just has to be separate complaints. You may get a different investigator assigned to multiple complaints filed.

Involving External Agencies

For violations involving discrimination or privacy breaches, contact the OCR. Be aware of the different standards for discrimination and other medical malpractice complaints. OCR has a different process for handling complaints, including timelines and potential outcomes than state medical boards. The following are some examples of potential institutions, practices and providers that must abide by federal civil rights laws:

  • Hospitals

  • Medicaid and Medicare Providers

  • Family health centers

  • Community mental health centers

  • Alcohol and drug treatment centers

  • Day care centers

  • Health insurance plans or companies

  • Pharmacies

  • Homeless shelters

  • Health researchers

When the Office for Civil Rights (OCR) receives a complaint, they first assess if they have the authority to investigate it. This typically involves violations of medical privacy laws like HIPAA, which protects your health information or discrimination by race, color, national origin, disability, age, sex, and religion. The complaint must be filed within 180 days of either the date of the alleged violation or from the date when you should have reasonably become aware of it.

Once OCR completes its investigation, they send a letter to the person who made the complaint. This letter explains what OCR did during their investigation. If OCR finds that a healthcare provider or a business associated with healthcare hasn't followed the health privacy laws properly, they might agree on a plan with them. This plan is aimed at fixing the issues found and ensuring that the medical provider follows the privacy and anti discrimination rules correctly in the future.

b. Patient Support Groups:

Consult patient advocacy groups or organizations specializing in Infection Associated Chronic Conditions for guidance and support in addressing violations. Here is a list of some helpful groups.

Seeking Legal Assistance

a. Consulting an Attorney:

For serious violations, consult an attorney specializing in healthcare or patient rights. Be aware of the challenges in securing a medical malpractice lawyer, especially for chronic illness-related cases or if you're an advocate. Word of mouth referrals may be more effective than internet searches. Here is an organization that may help steer you in the right direction. 

b. Highlight Specific Legal Terms:

Familiarize yourself with laws and regulations protecting patients, and discuss potential legal actions with your attorney. Be mindful of the specific legal terms that lawyers seek in potential cases.When familiarizing yourself with laws and regulations that protect patients and discussing potential legal actions with your attorney, it's important to understand and highlight specific legal terms that lawyers often look for in potential cases. These terms can vary based on the nature of the complaint, but some common examples include:

Negligence: This term is crucial in medical malpractice cases. It refers to a failure to provide the standard of care that a reasonably competent medical professional would have provided under similar circumstances.

Breach of Duty: This term relates to a healthcare provider's failure to fulfill their duty to a patient, which could include failure to diagnose, improper treatment, or failure to warn a patient of known risks.

Causation: A key element in legal cases, causation links the breach of duty to the harm suffered by the patient. It must be shown that the provider's actions (or lack thereof) directly caused the patient's injury or worsening condition.

Damages: This term refers to the harm suffered by the patient, which can be physical, emotional, or financial. Demonstrating damages is essential for a successful legal claim.

Informed Consent: This is the process by which a healthcare provider educates a patient about the risks, benefits, and alternatives of a proposed treatment or procedure. A lack of informed consent can lead to a legal claim if the patient suffers an adverse outcome they were not adequately warned about.

Duty of Care: This term describes the obligation of healthcare providers to care for patients in a manner that a competent and reasonable professional in the same field would.

Confidentiality Breach: Involves unauthorized release or misuse of patient information, which is protected under laws like HIPAA (Health Insurance Portability and Accountability Act).

Vicarious Liability: This legal principle holds an employer (like a hospital or medical facility) responsible for the actions of their employees (like doctors or nurses), provided those actions occur during employment.

Standard of Care: A legal term referring to the level and type of care an average, prudent healthcare provider in a given community would provide to a patient under similar circumstances.

Understanding these terms can help in identifying potential legal issues and effectively communicating with an attorney about the specifics of a case.

Raising Awareness

a. Using Social Media and Local News:

Share your experiences responsibly on social media or with local news outlets to highlight the violation and advocate for change. The Washington Post, New York Times and the Atlantic, to name a few, have been very involved in highlighting patient experiences in a way that has helped generate more favorable outcomes in terms of accessing adequate medical care. However, be careful in sharing certain sensitive details, especially if considering legal action and be aware that this may open you up to trolls on social media. Furthering your trauma in the ordeal.

b. Engaging Patient Advocacy Communities:

Raise awareness in Infection Associated Chronic Conditions advocacy communities, sharing your experience to inform and prepare others for similar situations. Here is a small but mighty list of organizations to start. 

Understanding and advocating for your rights as an Infection Associated Chronic Conditions patient is vital, but knowing how to act when rights are violated is equally important.

Empower yourself with knowledge, document incidents, and take appropriate steps to ensure your rights are upheld in the healthcare system. Your actions contribute to creating a fairer and more equitable healthcare environment for all.

However, reporting a medical care violation is more than just a procedural task; it can be a deeply emotional journey, especially for those who have already endured traumatic experiences in healthcare settings. Stepping up to report a violation often means having to confront and articulate painful past experiences, a process that can resurface symptoms of PTSD or trigger intense emotional responses.

Reliving these moments while detailing them for reports or legal action can reopen emotional wounds, bringing feelings of fear, anger, or vulnerability back to the surface.

That release of cortisol can then increase the severity of your chronic illness symptoms, making it hard to continue the process in a safe and healthy way. It's important for anyone starting on this journey to recognize the potential for such emotional impacts and to actively seek supportive resources, whether it’s professional counseling, community support groups, or the comforting presence of friends and family. Embracing and managing these emotional challenges is a vital part of the healing journey, empowering one to advocate for justice and personal well being with resilience and strength.Struggling emotionally through this process doesn't make you weak it makes you human.

A special thank you to Senator Kaine’s team, Solve, Hugo Health Kindred, MassMe and Dr.Putrino at Mt Sinai, Dysautonomia International, my primary care provider, and the collective longhaulers and ME/CFS patient communities for their knowledge, and support through my personal journey with medial bias and egregious harms I have experienced with my attempt at getting adequate care for my Infection Associated Chronic Conditions.

Disclaimer: This blog post is for informational purposes only and is not intended as legal or medical advice. The process of reporting medical care violations and navigating the healthcare system can be emotionally challenging, especially for those with past traumatic healthcare experiences. The information provided here is general; individual experiences and legal circumstances may vary. Readers are encouraged to seek professional legal or medical advice for their specific situations. This post aims to inform and empower, but it's important to approach these processes with awareness of their potential emotional impact and to seek appropriate support when needed. This blog post was also written with help from ChatGPT


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