Looking Forward to MedX

Last year I was an ePatient Delegate to MedX; once it was over I was able to call myself an ePatient Scholar. 

Being there was an experience that changed me. Even though I made some super-klutzy moves that I will keep to myself, I have no regrets. Meeting so many Twitter friends and powerful patients who speak my language was an irresistible draw.

This year I won't be there, so you might ask, why am I looking forward to MedX? 

I'll be trying to watch on the livestream, but on Saturday I'll be at an all-day session of a Citizen Advisory Group, and on Sunday will be in a participatory meeting ensuring that elderly Canadians and their caregivers will have their voices heard.

Events like these were not on my calendar prior to Medicine X. It changed the way I look at the health care system and the role of patients in it. It also affected my confidence in the ability of patients, (including myself) to be involved in decisions about health care.

MedX is more than just a three day experience for the patients who attend - they all have work to do to prepare themselves. Giving an Ignite talk is more than just standing up and talking for five minutes. The presenters work on the Ignite talk all summer - they consult, prepare and practice.

The IDEO Design Challenge showed a different way to learn and think - reading books on Design Thinking, watching videos, and preparing the ideas - the "How might we..." statements that the prototypes are based on.

The ePatients on the production track work hard too - blogging, tweeting and publicizing the event before, during and after the conference. In addition there were other team building projects so that by the time  ePatient Delegates arrive at MedX they feel like part of a team.

You might wonder how this connects to looking forward to this year's MedX for me when I will miss so much of it?

The reason is that this process, the work that the ePatients do means that when the candidates arrive at Medicine X they are prepared - equipped for the conference, enthusiastic and ready to be changed.

Seeding like a dandelion (Sydney, Australia)

And that's what I look forward. Seeing more patient advocates develop larger profiles as coming year unfolds, seeing the connections they make help their work grow and spread, seeing more people who are empowered and confident of their abilities to change the way things work in healthcare. They're also ready to inspire others, to encourage them to go to MedX next year and create more change.

ePatients don't always just pop up out of nowhere - they need a little sunshine to grow, and that's what MedX is good at, so good luck and have fun to all of the new ePatient Delegates!

Connections. MedX 2012 from @symplur. 

Power Equality: Not Even on the Radar

A few years ago I was pleased to be invited to attend a conference called "Reaching the Summit: Leading the way from Interprofessional Education to Practice". Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more members involved in the health team.

It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as "Patient Guests" in both columns. That seems to imply that our place is not secure - maybe it isn't a given that patients will always be invited to participate.

We're trying to make the right connections

At the event a large part of the afternoon was spent in breakout sessions, each one with a patient representative. The teams were composed of people working in hospital administration, in medical education, clinicians, allied professionals and, as at the IDEO Design Challenge, the variety of opinions led to strong and useful conclusions and strategies.

At one point in the session I commented that the very words 'inter-professional collaboration' on their own seem to exclude patients. With that as the conference description I did not feel originally that I belonged in this discussion.  It was wonderful to hear that others at the table agreed with me. In fact the facilitator of our session had written a paper on that topic titled Interprofessional jargon: How is it exclusionary. Cultural determinants of language use in health care practice!

With exclusion on my mind, I transcribed this sentence from a webinar on YouTube on the topic of Patient and Family Engagement:
"In summary, we can think of patient and family centered care as the umbrella term for the approach or, as then is implicit, the container concept that encompasses the elements and arranges the activities that come to define patient engagement, towards the ultimate aim of improving patient experiences and outcomes."

It does not sound like "Let's engage the patients!" language to me.

Here's a definition of Patient Experience from The Beryl Institute:
"The sum of all interactions, shaped by an organization's culture, that influences perceptions across the continuum of care."

I wonder if healthcare organizations give much thought to engaging patients and families so they can provide input and influence decisions before they are made.

                       It takes co-ordination to make all of the components work together

This blog post by Dr. Matthew Katz, on the Mayo Clinic website, E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Healthcare Better for Everyone makes great points.  Here are a few quotes from his excellent post:

"Empowering patients and doctors ensures they can work together. If patients and doctors don’t stand up for themselves, other stakeholders  (e.g. hospitals, insurers, industry) may unwittingly make things worse.

Thoughtful, vocal patients, caregivers and doctors should stand together. Even when we disagree, we can respect our differences while working toward solutions, both in clinic and for the health care system. We need each other. And if we support each other, the entire health care system will be the better for it."

I encourage you to read the whole post. The idea  of doctors and patients as natural allies seems like the right choice to make.