HCSMCA in Vancouver

The #hcsmca symposium felt like a family reunion, or a live in person tweetchat, from walking in the door of the room in the morning, right until I left for home.

Feels as though we've known one another for a long time

The atmosphere in the (un)conference room was excited and exciting. Robyn Sussel was an excellent moderator and starting with a prayer for the day from Syexwaliya of the Squamish Nation was an inspiring beginning.

Pat Rich talked to us about only building what you can maintain, and quoted @Berci. "I want every medical professional and empowered patient worldwide to feel connected to many others... when they have questions or just need a good word or support.  Social media has the potential to become this bridge between people"

Colleen Young talked about the strong sense of belonging and the give and take in social media - the way the Twitter welcome wagon is ready for anyone. And one of the biggest achievements of social media is that it helps people to take a step back - it breaks down silos, is a fountain of plain language, and creates circles of trust and real conversations. We need that trust to be able to share

So we all came to Vancouver to do more of that, and to try to make a road map to see HCSMCA into the future.

Larry Chu asked us how we use technology to break through silos and achieve mutual trust and inclusivity.

Lee Aase gave us sharing and learning from the Mayo Clinic and talked about how having a group of co-belligerants helps break through the blocks such as patient privacy.  

His point about healthcare shifting and emphasizing respect over power was chosen as one of the top 10 ideas of the day. Larry Chu added to that with "How might we improve healthcare if we focus on respect instead of power?"

Another idea from Lee Aase "Don't let perfect be the enemy of good." and a top idea from Colin Hung "Change the world locally." That one is worthy of a  shirt.

More advice from Colleen Young "Model the behaviour that you want to see and spend time on the people who do model it."

Then with these two memorable statements -

"Take one bite out of the elephant at a time." Robyn Sussel

"The Law of Two Feet - You can move to another group at any time."

- we were ready for 12 challenges in 50 minutes.

I picked Challenge #7: Using social media to advocate for policy change
Deb Maskens submitted it and led the group. It was a real learning experience for me.

We talked about engaging with policy makers, strategic positioning of advocacy, mutually beneficial partnerships, moving from slacktivism to interactivism, the qualitative shift in how people are engaging now.

Incremental change is a key as we ask why research, evidence and common sense do not carry the day. Question: What is respectful political advocacy?
One obstacle noted is that when patient groups meet with the opposition party they lose credibility with the government.

Another important barrier is the structural exclusion of advocates from decision making.

Our group of Canadians using social media, who have a passion for changing the healthcare system, had a very rich discussion about changing the system - in fact we decided to start using a new hashtag (I just checked and we will be the first) #HCsystemChange. 

We sent ourselves a postcard from the future, and since this very useful conference also gave us the ability to keep in touch with one another, we will be working on making some progress.

All of the challenges had ideas that were usable. I think the largest challenge we are faced with is making use of what we learned, and keeping in touch with our community. The value of community was obvious at the Unconference, and I think we all learned how effective it is to have the whole team working on solutions.

Personally #hcsmca has made a large difference to my life and seeing virtual community change to real life community in BC was a powerful experience.

Meanwhile I look forward to the next Road Trip!!

Andre Picard with delegates from #hcsmca

More ideas:

Proceed until apprehended. Pick a back-burner idea and go for it on Monday.

Involve patients.

Use technology to support patients.

Don't let perfect be the enemy of good.

How do we listen to and use stories and then turn the stories to action?

Patients Included: A Charter for Conferences

The Patients Included Charter for Conferences has just been published today, May 1. This post describes some of my feelings about attending conferences as  a patient.

Before attending Medicine X at Stanford University in 2014 I had only been to one medical conference other than those put on by the Sjogrens Society of Canada of which I am a member. 

Once I returned home from MedX it seemed like a natural progression to be involved in and learning in a more public way. After years of support groups, blogs, Twitter and searching for knowledge every day, the MedX experience was a catalyst. Seeing so much enthusiasm for the patient voice and for change in healthcare made me feel that my thoughts and opinions were not fringe ideas any more; they resonated.

After MedX, last September there was a Patient Experience conference that I remembered from the year before - they were widely criticized through social media because there were no patients, either in the audience or as presenters, despite the name "Patient Experience." In 2014 they added a strong patient advocate to the program planning and invited patients to attend and to speak. No one in attendance complained about patients being there, and this year they seem to be following the #patientsincluded model.

The benefits of conferences as stated by a Healthcare Conference company : a chance to "engage in open honest discussion, networking with peers from across the country and leveraging knowledge from leading experts in this field"

The benefits and knowledge available at a conference can be put to good use by any of the team members involved in health care, including patients. In fact when the information learned is useful and novel, it gets shared at the speed of social media through tweets, blogs, chats and even in conversation.  As an example, less than  a week after the CADTH Workshop about Critical Appraisal in Saskatoon I passed the appraisal tools on to my partners in a PaCER research project and used it to inform my opinions in a Health Care Social Media Canada (#hcsmca) tweet chat. That's a speedy way to get it out of the silo.

I think there is no better way of mobilizing knowledge than to disseminate it widely. As Jack Andraka said at MedX we need knowledge democracy and to me that means more than just the facts - patients need lived experience with the healthcare spectrum in an atmosphere where they are people first and patients second.

More than meets the eye to patients

Last night I had dinner with a group of active patients and for interest I asked them for their job titles. This is what I got:

I am a patient  and have a PhD in Cellular Molecular Pathology.

I am a patient and a Speech Language Pathologist.

I am a patient and an IT Professional on the IBM Watson Health Team.

I am a patient with 20 years of experience in qualitative research.

I am a patient and a senior project manager in IT.

There is always more than meets the eye.

The impetus to have patients included in conferences has been part of the engaged patient movement for years, with Tom Ferguson laying the groundwork, with Lucien Engelen creating a logo to be used where patients are included, and now with Andrew Spong and an international group working together to create "A Charter For Conferences." It has been introduced on Friday May 1 and this blog fully supports the Charter.


To find links to more blog posts about the Charter watch #patientsincluded on Twitter.

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)

Information. Shared and Not Shared

There's a reason I see that darn Phil Mickelson ad for Enbrel everywhere I go when I'm browsing.  That one and Lumosity are dogging my virtual footsteps at website after website.  I know where they come from of course.  Over the years I have dropped many fragments of information about myself on electronic media. Some were freely given and some were not. 

                                         freakingnews.com
And all of those bits of information have made me a target for those who advertise and profile.  It's obvious from my browsing habits that I have an interest in diseases where high priced biologics are used so that accounts for Phil and the Enbrel. And advertisers are also assuming I may be starting to worry about my cognitive abilities as well. 

In the middle of a tweetchat recently I suddenly became more conscious of this situation and interpreted the feeling by thinking of Hansel and Gretel dropping breadcrumbs going through the woods. When I said this others in the chat agreed, with J. Shore saying he feels like that "Only on days that end in y".

We're all out there leaving information where it can easily be found by others and making our individual trails. Dr. Ann Becker-Schutte, a psychologist from Kansas City, gave me a different perspective in the #EOL chat when she said "But you are helping more people than yourselves find the way home."

That is a motivating factor for many people posting in online blogs and commenting about their experiences.  They are trying to use their experiences to inform and help others who have an interest in similar topics. People faced with a new health experience in particular are likely to find the experiences of others to be helpful.

For years I have been reading health related blogs written by both patients and a variety of health care professionals. They have been touching, informative, educational and all have contributed to making me healthier. I think people interested in health form one of the strongest social media communities.  When you look at the #rheum, #hcsm and #hcsmca on Twitter you find links to more resources than you will have time to digest.

So pick your favourites and dive in.

This used to be a free game that made me question my cognitive ability. I never Beat the Chimp but it's good for your brain to try some of these games. 

Twitter Chats

I have participated in a few twitter chats recently and met a lot more people in the patient and health care professionals area.  The chats are so invigorating and the new ideas for sites and methods to find out information are given so readily.

The first time was very intimidating.  There were so many tweets coming in from so many people at once that it was hard to follow.  That was the chat for #HCSM (Health Care Social Media) on Sundays at 9:00pm eastern.

The second time was Wednesday night for the #HCSMCA (Health Care Social Media Canada).  It was a smaller chat and I am learning. It was easier to participate in that one.  Their usual time is Wednesdays at 1:00pm eastern time.

The sense of community and purpose in chats is inspiring.

I like to search PubMed for health information and read blogs, mostly health related, but doing that can be too much of the same thing.  The adrenaline is missing with documents unless someone actually comes to conclusion that make your blood boil.