Do You Have a Health or Patient Advocate?

This is the blog for #hcsmca chat being held on Wednesday February 12, 2014 at 1:00pm est. You can see the post at the #hcsmca site . Natrice (@NatriceR) and I are co-moderators. 

By Annette McKinnon and 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. We talked about the power and value of the patient narrative.  

After the chat, we (Natrice and I)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

Re: On Breaking One's Neck 

Arnold Relman, a 92 year old surgeon, had 3 doctors and 3 lawyers in his family. Despite having a whole team of advocates and good access since he was the ultimate "insider", Arnold still had issues and needed advocates.

Excerpt

"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."
We added the phrase "or their advocate"

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

1.  What is your definition of a patient advocate?

2. Can you share an example of the benefits of having an advocate ?

3. How have social media groups like #hcsmca changed  the patient experience ?

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

So many "E"s in Our Lives

There are so many "E"s in ePatient. We've got engaged, empowered, equipped and enabled as goals, and many of us are working diligently to achieve "all E"s on our progress cards. The resulting (hoped for) collaboration with our doctors is a big step from the position most of us are in when we get a chronic disease diagnosis.

ePatient by Anet

To take on an active role in our care we need to be empowered, equipped, enabled and engaged.  As we truly start working on upgrading our skills to effective levels there are a few other "E" things that will help us.  It's almost like a puzzle game. Finding those special "E"s can help you to become an ePatient. 

I think the missing "E"s are encouragement and empathy, and it is the letter E that is sponsoring this idea.

A letter from our sponsor.

You can use them in your own attitudes towards yourself, but they are most powerful when they come from someone else

With a sudden health problem that is unlikely to disappear you wish for superpowers just to get to the normal level that other people appreciate. Sometimes it's empathy or encouragement that gives you the key to gaining knowledge or improvement.

Empathy  - you know when it's not there - can be enhanced by some films or books as described in this blog post called "Empathy - The Secret Sauce in Physiotherapy?". Coincidentally my best source of encouragement has been my physiotherapist. See this post about a turning point for more details about encouragement/empathy.

Here's another story/post where coaching and encouragement were good for doctor and patient. I really liked Dr. Thiele Isip Tan's enjoyment of her patient's success.

Maid of the Mist Double Rainbow. Dad's last cruise

For me the old model of doing everything that I was told and feeling that poor progress was my failure has been left in the past. 

And on the positive side I read (and can't find the link) that having a chronic illness and treating it very well is a secret to a long life.

Here's another link that I liked Placebo, Nocebo, and Expectations: Leveraging Positive Outcomes. The idea that even non-verbal clinical behaviour can influence patient outcomes certainly helps to explain why some patients thrive with a certain course of treatment while others don't.