Navigating Patient Privacy in Our Health System: Unlocking Family Support

Demystifying Information Sharing and Privacy: A Deep Dive into Patient Privacy and Family Support.

This recent BC Mental Health & Substance Use Services (BCMHSUS) Webinar unveils a wealth of information. Find out what happens when the health system, adult patients, and family converge? How does privacy work for adult family members? Do families have rights? How do families advocate? Find out these answers and so much more.   

Below is a short overview of what you'll see watching the webinar.

Victoria Maxwell, a seasoned mental health advocate, opens the ninth session of the Concurrent Disorder Webinar series, "Demystifying Information Sharing and Privacy." She welcomes us to explore a complex yet vital topic: How personal information is shared and protected within the realm of mental health and substance use care. This includes patient privacy rights and how families can interact to advocate for loved ones in the health system.

Victoria's journey is one of profound personal experience. Battling bipolar disorder, anxiety, and psychosis, she has transformed her challenges into a beacon of hope and knowledge for others. Today, she's our guide through a labyrinth of regulations, best practices, and deeply personal stories.

The Landscape of Information Sharing

Imagine navigating a dense forest. Each tree represents a piece of personal information—some are sturdy and open to the light, while others are shrouded in shadows, hidden for protection.

In British Columbia, the path through this forest is marked by the Freedom of Information and Protection of Privacy Act (FIPPA). This legislation outlines three main trails for information sharing:

1. With Consent: This is the clear, sunlit path where individuals can decide to share their information with trusted companions. Consent is a flexible guidepost, easily adjusted or removed.
2. For Continuity of Care: Here, the path branches out to ensure that those involved in an individual's care—whether family or healthcare providers—have the essential details to support them effectively.
3. In Compelling Circumstances: This rugged trail is navigated when immediate safety is at risk. It's a path taken with urgency, ensuring protection when it’s needed most.

Watch/Listen To The Complete Webinar:

https://mediasite.phsa.ca/Mediasite/Play/7b975345babb4cccab550a30edbd018e1d

Voices from the Journey

Our journey is enriched by the voices of three remarkable guides: Anita David, Margo Dent, and Becky Hynes.

Anita David: The Path of Respect and Autonomy

Anita shares her harrowing experiences of privacy violations during her mental health crises. Imagine being in a storm, seeking shelter, only to find the roof blown off by well-meaning but invasive hands. For Anita, the right companions on her journey were not her family, who struggled to understand her, but her roommate and former manager, who offered the empathy and respect she needed. Her story underscores the importance of honoring individual preferences in the information-sharing process.

Margo Dent: The Guardian’s Perspective

Margo speaks from the heart of a mother who lost her daughter, Marni, to mental health and substance use challenges. She reminds us that the journey isn’t just about the individual walking it, but also those who walk alongside them. Margo learned to balance sharing critical information with healthcare providers while maintaining her daughter’s trust. Her tale is one of love, loss, and the delicate dance of respecting autonomy while offering unwavering support.

Becky Hynes: Bridging the Gaps

Becky, a director at BC Mental Health Substance Use Services, brings a wealth of knowledge about the legal and ethical frameworks guiding information sharing. They emphasize the importance of addressing Indigenous-specific racism in healthcare and involving families to improve outcomes. Becky’s insights are like the well-marked signs in our forest, guiding us through the thicket of regulations and ethical considerations.

Strategies for the Journey

Throughout the webinar, practical strategies for supporting patients and families emerge. Consider the idea of a Wellness Recovery Action Plan (WRAP)—a detailed map outlining one’s needs, preferences, and support network. Victoria herself reflects on the peace of mind such planning can bring, recounting her own hospital experiences where lack of preparation added unnecessary stress.

When the path becomes challenging, and a patient is reluctant to share information, the healthcare team should document these wishes, explore underlying reasons, and revisit them regularly. This ongoing dialogue ensures respect and adapts to changing needs, like adjusting your compass as you navigate evolving terrain.

Building Bridges in the Forest

A significant portion of the discussion revolves around the role of family and supporters. What if the primary caregiver is at odds with the patient? Who determines if the patient can make sound decisions? Here, the psychiatrist often steps in, assessing the patient’s capacity and balancing their wishes with practical needs.

Family members are encouraged to share pertinent information, even when access to their loved one’s details is restricted. By establishing themselves as allies in the care process, they can help illuminate the forest path with valuable insights, always ensuring transparency and respect.

Final Thoughts

As the session concludes, each panelist shares parting wisdom. Anita stresses the importance of healthcare providers thoroughly understanding patient preferences from the start. Margot reflects on the significance of respecting whose story it is to tell, a poignant reminder of the delicate balance between support and autonomy. Becky urges healthcare providers to remain curious and compassionate, fostering connections that transcend mere information sharing.

Victoria Maxwell wraps up the session with gratitude, ready to transition into a Q&A, a space for further exploration and shared learning.

In the end, this webinar is more than a discussion on privacy and information. It's a call to navigate the dense, often bewildering forest of mental health care with empathy, respect, and an unwavering commitment to those we support. Through shared stories and expert guidance, we can transform this journey into one of hope, understanding, and mutual growth.

The Author: Ron Merk – Ron advocates for people and families experiencing concurrent disorders.