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How do patient advocates communicate with patients about their data rights and risks?

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Patient advocacy and information security are two crucial aspects of health care that affect both patients and providers. As a patient advocate, you need to be aware of the data rights and risks of your clients, and communicate with them effectively and ethically. In this article, we will explore some of the best practices and challenges of patient advocacy and information security, and how you can enhance your skills and knowledge in this field.

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1 Data rights and regulations

Patients have the right to access, control, and protect their personal health information (PHI), which includes medical records, diagnoses, treatments, and billing information. Depending on where you work, there may be different laws and regulations that govern how PHI is collected, stored, shared, and used. For example, in the United States, the Health Insurance Portability and Accountability Act (HIPAA) sets the standards and rules for PHI protection and privacy. As a patient advocate, you need to be familiar with the data rights and regulations that apply to your clients, and inform them of their options and obligations.

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Yolanda Golebiowski

Independent Consultant,Public Speaker, Live Coach and Author.
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Most individuals are aware of HIPPA as the federal law that protects the client’s privacy and security of their health record. Health agencies such as healthcare providers, insurance agencies and caregivers must comply with this federal regulation. Prior to services the client must obtain a Notice of Privacy Practices, explaining on how the health agency protects and discloses the client’s health record. It should also include on how to file a complaint in the event of personal information misused. The Client should provide the health agency with authorization as to whom his PHI will be disclosed . The client had the right to revoke the authorization at any time.

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Shawna Watt

Nurse Educator in Simulation | Nurse Mentor | Nurse Leader
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In Canada, the Personal Health Information Protection Act (PHIPA) establishes the rules for collecting, using and/or disclosing PHI that protect the confidentiality of that information and the privacy of individuals. As healthcare providers, our responsibility is to always ensure we obtain an individual's consent to collect, use and/or disclose PHI while respecting an individual's right to withold or withdraw consent of the collection, use and/or disclosure of PHI.

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2 Data risks and threats

While data rights and regulations aim to safeguard PHI, there are still many risks and threats that can compromise its security and integrity. These include cyberattacks, data breaches, identity theft, fraud, and human error. Some of the consequences of data loss or misuse can be severe, such as financial loss, legal liability, reputational damage, and physical or emotional harm. As a patient advocate, you need to be aware of the data risks and threats that your clients face, and advise them on how to prevent and respond to them.

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Yolanda Golebiowski

Independent Consultant,Public Speaker, Live Coach and Author.
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The client needs to be informed while the health care agency may do all to protect their health record; the health agencies work with third party services that may introduce potential risk at their point of service. The client may request information as to how the third party services comply with the HIPPA and PHI regulations.

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3 Data communication and consent

One of the key roles of a patient advocate is to communicate with patients about their data rights and risks, and obtain their consent for data collection, sharing, and use. This requires clear, accurate, and respectful communication skills, as well as ethical and professional judgment. You need to explain to your clients what data is collected, why it is collected, how it is stored, who it is shared with, and what it is used for. You also need to respect their preferences and choices, and ensure that they understand the benefits and drawbacks of their decisions.

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4 Data literacy and education

Another important role of a patient advocate is to educate patients about their data rights and risks, and help them develop their data literacy skills. Data literacy is the ability to understand, interpret, and use data effectively and responsibly. It can help patients make informed decisions, protect their privacy, and advocate for their own interests. You can help your clients improve their data literacy by providing them with relevant and reliable information sources, tools, and resources, and by encouraging them to ask questions and seek clarification.

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Yolanda Golebiowski

Independent Consultant,Public Speaker, Live Coach and Author.
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A well informed client will take an active role and make informed decisions regarding his health condition thus, enhancing his quality of life and healthcare experience.

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Shawna Watt

Nurse Educator in Simulation | Nurse Mentor | Nurse Leader
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I've found having dedicated staff to support providing individuals with the tools and resources to seek information and play an active role leads to improved care collaboration, therapeutic relationships and more informed care.

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5 Data advocacy and empowerment

As a patient advocate, you are not only a communicator and educator, but also an advocate and empowerer. You can use your data knowledge and skills to support your clients in their health care journey, and to promote their data rights and interests. You can also help them voice their concerns, complaints, or feedback to the relevant authorities or organizations, and seek remedies or solutions. By doing so, you can empower your clients to take charge of their own data and health, and to improve their quality of life.

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6 Data challenges and opportunities

Patient advocacy and information security are not static or simple fields. They are constantly evolving and changing, as new technologies, policies, and practices emerge. As a patient advocate, you need to keep up with the latest developments and trends, and adapt to the changing needs and expectations of your clients. You also need to recognize the challenges and opportunities that arise from these changes, and leverage them to enhance your service and value. For example, you can use digital tools, such as apps, websites, or platforms, to improve your data communication, education, and advocacy.

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Dominic Etli

Clinician | Professor | Data Scientist
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Patient advocacy and information security are constantly evolving fields in healthcare. Advocates need to adapt to changing needs and use digital tools to enhance communication and education for patients. Security professionals must stay updated with cybersecurity trends to protect patient data.

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How do patient advocates communicate with patients about their data rights and risks?

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1 Data rights and regulations

2 Data risks and threats

3 Data communication and consent

4 Data literacy and education

5 Data advocacy and empowerment

6 Data challenges and opportunities

Patient Advocacy

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How do patient advocates communicate with patients about their data rights and risks?

1

2

3

4

5

6

1 Data rights and regulations

2 Data risks and threats

3 Data communication and consent

4 Data literacy and education

5 Data advocacy and empowerment

6 Data challenges and opportunities

Patient Advocacy

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