Navigating Privacy and Confidentiality as a Patient Research Partner

Patient research partners play a vital role in shaping, influencing, directing and leading research. However, with this responsibility comes a host of ethical considerations—chief among them are the issues of privacy and confidentiality. Let's delve into the key aspects of maintaining privacy both for the study and yourself, and what you should be pondering along the way.

Part 1: Safeguarding Study Data Confidentiality

Understanding the Scope of Confidentiality

What Does It Mean?: Being well-informed about the types of data you can and cannot share is pivotal for ethical research engagement. The research lead will go over these things in detail with you, and often, you will have to sign a confidentiality agreement to ensure the safety, protection, privacy and confidentiality of the participants in the study.

Questions to Consider:

1. Can you differentiate between confidential and non-confidential data?

   • Knowing what can and can't be talked about helps maintain the integrity of the research.

2. What are the ethical implications of sharing data with your community?

   • Sometimes sharing information with your community might seem harmless but could compromise the study, or its participants, or both!

Implementing Data Safeguards

What Does It Mean?: Ensuring the data you handle is stored securely and that you are aware of what to do in case of potential data breaches.

Questions to Consider:

1. Do you know where and how to store sensitive data securely?

   • The onus is often on individual team members to keep sensitive data safe.

2. Are you aware of the protocol for reporting data breaches?

   • Knowing whom to contact and what steps to follow is crucial for effective response to data breaches.

Part 2: Protecting Your Personal Privacy

Navigating Consent and Anonymity

What Does It Mean?: Different people have different comfort levels regarding how publicly they're associated with a study.

Questions to Consider:

1. How do you feel about having your name on publications?

   • Acknowledgment can be gratifying but also comes with public visibility (this is because when it is published in a journal, it cannot be taken down later).

2. Have you considered the nature of public acknowledgment?

   • Always put yourself, your health and your needs first. Perhaps you might like to use a different name to publish under if you are not comfortable with family members or friends or community knowing about your involvement in this work but still want to ensure that your contributions are acknowledged.

Understanding Withdrawal Procedures

What Does It Mean?: Knowing your rights about stepping back from a study, and how it affects your data and privacy, is important.

Questions to Consider:

1. Do you know how to withdraw your participation if needed?

   • This is always an option! Some of your contributions may stay with the study even after you depart. Make sure to ask questions about this if you are unsure.

2. What will happen to your data and acknowledgment if you withdraw?

   • Consider how your existing contributions will be treated if you decide to exit the study.

A Balanced Ethical Approach

Maintaining privacy and confidentiality isn't just about following rules; it's a critical ethical commitment that respects both the research project and your personal boundaries. Remember, when in doubt, always ask questions and consult with the research team. By considering these crucial aspects, you can make meaningful and ethical contributions to research while also protecting your own privacy.

Take your time and consider each of these questions. They are primarily intended to stimulate thought so you can navigate your role as a patient research partner responsibly, effectively and safely for yourself an others.