Patient Engagement

Voice, Choice, and Care: Learning about Patient Engagement in Health Systems

I knew that “Leah”[1] was passionate about this topic before I had even met her. I had sent out the invitation via email earlier that morning, asking people if they wanted to participate in an interview about their experience as a “patient advisor” within a health care system. Just a few hours later, I had more than 50 responses. People that wanted to talk, to tell me their stories, to ‘help’ in some kind of undefined way.

Brief, friendly, peppered with few exclamation marks, Leah’s email told me about her passion for patient advocacy. Advocacy in general, really. When I did finally meet her for the interview, it was a polar vortex of a day. A cold, unforgiving sort of day.

Leah arrived at the agreed upon meeting place. I had tried to find a spot more convenient for her. But, in the end, she met me in a non-descript conference room in the hospital.

She arrived quietly, with polite introductions. Her hair was perfectly groomed, her manner professional. (She told me later she was wearing a wig. Horribly itchy and uncomfortable on her sensitive scalp. She often didn’t wear the wig, only suffering through it when she found herself in public situations. Today, I was that public situation.)

Through the course of the interview, she told me about her life before and after. Before and after a life threatening diagnosis. Everything was put into those narrative terms: before and after. With a thread of advocacy connecting the two eras. Advocacy for her ailing parent (before). Advocacy for her own survival (during). Learning how to live with an illness and a heightened sense of mortality (after). And now – advocacy for a health system that can be responsive, humane, intelligent. To somehow make sense of her experience, to make use of her carefully honed advocacy skills.

This is where Leah’s narrative begins to merge with the other 19 patient advisors I interviewed for my AMS Phoenix Project study. United by a thread of intention; intention to have their experience in the health system matter in some way that was beyond them. The notion of giving “voice” for other patients. As one person said, “when I was a patient, my voice wasn’t as crisp”. And now, she gives voice to what she couldn’t articulate before. What others may not be able to articulate now.

Sometimes this voice is about the experience of care. The profound humanity of being a fallible body in need. The indignities, but also the moments of grace. The art of being seen as one wants to be seen. As a person in need, but also a person with a history, a future, a life that is beyond the clinical walls.

Sometimes this voice is cognitive, information-seeking. This voice exercises the notion of choice, empowered through information and intersections with technology. This is a logical voice. Rational. Eager to engage in project management activities and shared decision making.

But always, this voice is located – embodied really – in a person. And so, I also heard about families and friends. Lives that are inseparable from this notion of advocacy.

In the interview, I learned about Leah’s children. Her quiet pride in her son’s gentleness. Her hope that he holds onto this gentleness, despite pressure to be otherwise. Other mothers told me how they had written letters to their children. Good-bye letters. Letters that tried to convey their hopes, dreams, and deep sense of love for children that they might not see grow into adults.

And still these men and women agreed to be interviewed by me and my colleague. They still agree to participate in committees and advisory councils. They give their insights via surveys and focus groups. They engage. They use their time, their energy, to try to contribute to a health system that is resilient, is sophisticated, is kind.

And many only have limited time and energy left.

I realized, as I was listening to Leah talk about her son, that I am not impartial. I want to do well by Leah. By all the volunteers like her. People that are choosing to spend precious, precious time with me, with the health system, trying to make a difference.

So, no, I am not impartial. I care that the time we collectively spend trying to improve health care systems is well spent. I care that we engage with one another with a sense of respect, dignity, and compassion. I don’t think this makes me a poor researcher. I think this motivates me to put my best critical thinking – making use of all of my training, all of my aspirations – into this work. I think this makes me a Phoenix Fellow.

Leah – and our health care system – deserve no less.

– Paula Rowland, January 2015

[1] All names of interview participants have been changed to preserve confidentiality. “Leah” has read this posting and is supportive of its release on this site.

Deadline Looming for AMS Phoenix Project 2015 Fellowship and Grant Applications- Apply Now

The AMS Phoenix Project aims to make a difference in how health professionals develop and sustain their abilities to provide humane, compassionate, person-centred care. The project is focused on three overarching activities:

  1. The creation of champions who will model compassionate care in their everyday work
  2. The promotion of creative strategies for caring, to be developed, investigates and shared with the wider community.
  3. The cultivation of communities of practice, both existing groups and new networks, to advance compassionate care.

Each year a select group of health professionals are awarded AMS Phoenix Fellowships and Grants. Fellows recognized for their leadership skills in compassionate healthcare, build capacity in their home institution for more humane and supportive teaching and practice environments. The grants are strategic investments in projects focused on engaging health professionals, educators and their workplaces in activities that will enrich understanding about what is needed to balance human compassion and technical expertise.

If you, or someone you know, would like to become involved or wish more information about this important work, visit our website http://www.theamsphoenix.ca/ If you would like to apply for an AMS Phoenix Fellowship or Grant, please go to http://theamsphoenix.ca/fellowship-and-grant.html.

The deadline for Fellowship Applications is January 30, 2015 and Grant Applications is February 6th, 2015.

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