FEATURE Two – Listening to patients honed a career in research

||FEATURE Two – Listening to patients honed a career in research

FEATURE Two – Listening to patients honed a career in research

Rhonda’s journey – From flying nun hats to evidence-based care.

CRE’s Rhonda Garad is currently leading the research translation of the PCOS guideline (2018). This is the story of how she came to this role and why she thinks research translation is so critical to improving both health systems and, to the empowerment of women with PCOS.

Many, many (many…) years ago, I started my working life as a trainee nurse. This was at a time when girls living in the country had two options; they became either a teacher or a nurse. I wanted to do neither but I did want to live in the city and nursing offered me a place to stay.

On my first day of nursing training, a naive group of 20 students assembled in the classroom and were asked why we wanted to become nurses. Some said they had dreamt all their lives of becoming a nurse, others of fulfilling a sense of duty and service, while a few felt obliged to follow in the footsteps of their mothers and grandmothers. Listening to them, I felt like an imposter.

Rhonda Garad (far right) with her nursing buddies, Graduation night, 1986.

As one of Germaine’s (Greer) daughters, I felt I should have been scaling the corporate ladder or at least curing cancer or finding an end to poverty. Anything but donning a lilac (yes, I did say lilac!) uniform and wearing a ‘flying nun’ hat in readiness to become the handmaiden of male doctors.

However, I could not have known then that the life lessons I would experience as a nurse, would go on to shape the rest of my life. The most important one being that health systems are there to serve patients, not the other way around.

Anyone who works with sick people is likely to tell you that it is a rare privilege and that it strips you of your personal vanities and helps you understand just how vulnerable we all are as human beings. It makes you a better person.

There were also the patients that you never forget. Kate was one such patient who was a 38-year-old in the middle of a beautiful life when I met her. She had a loving husband, beautiful children and… a terminal diagnosis. In the months leading up to her death her room was always full of visitors, laughter and Chanel No. 5 (used to disguise the smell of her wounds). I asked her once how she was able to be so positive and her words have stayed with me; “I hate that I am dying but if I am then I am grateful I get to do it my way, surrounded by the love and laughter of the people that have enriched my life.”

I did not forget Kate’s words or the teaching from many other patients as I moved into senior roles in health management. In all of my decision-making during that time, I worked from the premise that patients must be given control over their lives, their decisions and treatments.

This is what research translation does. It informs health professionals of the latest evidence, it privileges the patient in all things and it orientates health systems towards improving the patient experience. This is why I find this role so fulfilling.

A unique aspect in the development of the PCOS Guideline was the inclusion of health consumers in all aspects of the research design. Consumers shaped the research questions, they were part of the distributed decision-making in the formation of the final recommendations and, they informed the research translation program.

Research translation is often under considered by researchers, who often dwell under the illusion that evidence will miraculously transfer from the confines of book into everyday practice. Research translation is the critical link that enables the implementation of evidence and improves lives.

“Research translation is the synthesis, exchange, and application of knowledge by relevant stakeholders to accelerate the benefits of global and local innovation in strengthening health systems and improving people’s health.” World Health Organisation.

Moreover, research translation is the catalyst for improved patient care and health equity. This is only fair as it is the patients and the community who fund research and who therefore should be the greatest beneficiaries.

The PCOS Guideline is currently being translated into four languages (Arabic, Simplified Chinese, Italian and Vietnamese). It has reached up to 71 countries and six continents, been presented at more than 70 high-level conferences, directly reached up to 40,000 health professionals (indirectly 800,000), generated 18 plus peer reviewed papers in high impact journals and viewed by up to 50,000 unique visitors online (see infographic).

Women with PCOS now have free access to a range of infographics, videos from experts, booklets, an online support group (POSSA) that uses evidence informed content, and the very first PCOS App (AskPCOS). Whilst living with PCOS is challenging at least now, more than ever before, women can make informed choices in relation to their care and self-management.

In writing this piece, the lilac uniform and flying nun hats seem like a lifetime ago but the learnings from my time nursing continue to reverberate and inform my work. Research translation is about health equity, about consumer empowerment and about helping women with PCOS live optimal lives. It is a great honour to be part of this.

 

2018-12-05T17:16:17+00:00