Do You Have a Health or Patient Advocate?

This week, Annette McKinnon (@anetto) and Natrice Rese (@NatriceR), patient and caregiver advocates extraordinaire and long-time #hcsmca members, will be moderating the chat. In this post they share their collective stream of conscience that led them to topics that are sure to interest all of us, especially with them at the helm on Wed. Feb. 12 at 1 pm ET.

By Annette McKinnon and Natrice Rese

Annette McKinnon

Natrice Rese

We used the discussion from the January 22, 2014 #hcsmca chat with Christine Spencer and Emily Nicholas (@Emily_Nicholas8) from @PatientsCanada as our starting point. That chat concerned the risks and benefits of patients sharing their stories online. #hcsmca-ers talked about the power and value of the patient narrative.

After the chat, we wondered: Why did the recognized value of the patient narrative not translate into patient influence in healthcare?

The patient narrative is informed by patient experience. If the patient story is so powerful, why do patients still have no voice?

We started to think about Ann Landers and moved on to the way bloggers are a lot like newspaper advice columnists, but for very specialized audiences. This led to a series of questions that helped us find our topic.

1. Who or what do patients and caregivers use to find out what they need to know, beyond the basics of the diagnosis, to help them figure out the intricacies of healthcare in chronic disease, aging, serious illness, dying, etc.?
2. We say patients and caregivers need an Ann Landers. Who do we/you choose to fulfill this function?
3. A patient navigator may be ideal as a co-captain or designated decision maker of your team? (An ePatient wants to collaborate, so we chose the term“co-captain”.)
4. How do patient navigators get recognition and hence inclusion? How can patient navigators best support their family member?
5. With respect to patient voice: Why does it feel like “them vs. us” when we attempt to learn the ropes? Where is (or how do we empower) our personal Ann Landers today?
6. Kingston General Hospital has a patient committee giving valuable input to every aspect of patient care. Is this happening in other hospitals and facilities?

Here are two articles that inspired us:

• Advocacy For Parents/Ontario Seniors by Jennifer A. Jilks (@jennjilks)
• On Breaking One’s Neck by Arnold Relman

Arnold Relman, a 92 year old surgeon, had 3 doctors and 3 lawyers in his family. Despite havinga whole team of advocates and good access since he was the ultimate “insider”, Arnold still had issues and needed advocates. He write “What is important is that someone who knows the patient oversees their care, ensures that the many specialized services work together in the patient’s interest, and that the patient [or their advocate*] is kept fully involved and informed.”

So for February 12’s #hcsmca chat, we propose the following topics about the importance of patient narrative.

• T1. What is your definition of a patient advocate?
• T2. Can you share an example of the benefits of having an advocate?
• T3. How have social media groups like #hcsmca changed the patient experience?

Read the transcript of the chat. (added Feb 12)

*We added the phrase "or their advocate".