Interview with Dawn Richards, PhD, Director of Patient Engagement, Clinical Trials Ontario and Vice President of the Canadian Arthritis Patient Alliance. Dawn is also a member of the PFMD Patient Engagement Framework Building core team.
What do you think of when you hear the word ‘patient’? A largely indiscriminate noun, it is defined by the Oxford English Dictionary as “a person receiving or registered to receive medical treatment”.
Yet patients are multi-faceted and multi-dimensional people, no more defined by their illness or condition, than they are by the various other labels they can apply to themselves. So why are patients stripped down to their barest, and often least meaningful, descriptor?
That is the question posed by Dawn Richards, PhD, in powerful op ed recently published on bmj.com.
Richards is founder of Five02 Labs Inc, a boutique firm that provides scientific and patient based services to clients and also acts as the vice president of the Canadian Arthritis Patient Alliance, a patient-run, volunteer-based organisation. In her article, she issues a call to action for physicians and other healthcare providers (HCPs) to look at the patient in the context of being an individual, taking an extra few minutes to ask them about their lives, their work, and their relationships.
Richards lives with the chronic inflammatory condition rheumatoid arthritis. A scientist by training, she has worked in academia, biotech, and not-for-profits, but it wasn’t until her diagnosis that she truly entered the world of patient engagement. Now, through her work, she strives to provide a patient perspective in different forums where it may not be typically heard.
“I saw the healthcare provider (HCP) voice being used as a proxy for the patient voice,” she explains. “While my rheumatologist is an amazing expert who furnishes me with all kinds of tools and advice, he does not live with my condition. He hasn’t walked in my shoes per se.”
The thrust of Richards’ opinion piece is to highlight the presence of a multidimensional person behind the label “patient”. Patients are seen as statistics or numbers; Richards argues that while this is unavoidable in some instances, interactions with HCPs should take more of a personal approach. Queries on quality of life, ability to carry out every day tasks, relationships with family and friends, should be part of the consultation – a conversation rather than an interrogation.
“I know that HCPs care deeply but as someone who is tied to the healthcare system for the rest of my life by virtue of living with a chronic disease, having conversations with my healthcare providers about how I want to live my life with my disease, I think sometimes options are not explored because HCPs impart their own biases on patients,” she says.
“My rheumatologist is biased based on his medical training; he believes that once the swelling and inflammation in my joints comes down, I will be pain and fatigue-free. But as a person who is living through that, I don’t want to think that my pain will be gone in the long term, I want something that will work for my pain and fatigue now.”
There are also side effects of her RA treatments that affect how Richards interacts with her friends and family and she admits that sometimes those get “brushed off”. “In the case of my disease, there are many statistics out there about how many people are living with clinical depression associated with rheumatoid arthritis. This isn’t discussed very often, and neither is sexual health, because our specialists are often not trained to deal with this.”
While Richards admits the needle is moving slowly towards working more collaboratively with patients, this must be a meaningful two-way conversation. “That’s when the most impactful solutions happen when both sides are invested and engaged in it, it’s not about taking information and running with it.”
When it comes to chronic disease, patients ultimately enter into a long-term relationship with their healthcare providers. This should mean honest and frank discussions, with a knowledge of the patient’s life outside their disease, says Richards. “Patients bring vulnerable stories and situations, and patient engagement should be about understanding and respecting these vulnerabilities. Our chronic conditions and healthcare aren’t a job for patients – we can’t just turn off from them at the end of the day.”
P.S. Do you believe patient engagement can change the face of the healthcare system? If the answer is yes, than you can also contribute to this cultural change. Click here to show your commitment and become part of the movement.
