The Patient Voice in Diabetes Research


The weeks guest post is from Katarzyna (Kate) Gajewska who spoke at an event called “The Patient Voice in Diabetes Research”, last June, organized by the University College Dublin Diabetes Complications Research Centre (UCD DCRC).

Kate is originally from Poland but has been living in Dublin for a number of years. Kate was diagnosed with type 1 diabetes when she was two years old and has lived with it for over 30 years. Kate spoke at Thriveabetes 2018: she is also a diabetes educator, psychologist, and currently a Doctoral candidate at the Royal College of Surgeons in Ireland.

 

THE PATIENT VOICE IN DIABETES RESEARCH

by Katarzyna (Kate) Gajewska

The voice of people with diabetes is becoming louder and louder, because of social media, diabetes online communities (DOC), and support groups. It is also getting much more attention from health care professionals as well as researchers and scientific organisations. We can all stand, side by side, to improve the quality of diabetes care and influence policy makers’ decisions. If you would like to read a blog post about the impact attending a patient event has on a healthcare professional have a read of this blog post from Dr. Partha Kar. #PatientsAreGreatTeachers

The researchers’ community seems to understand the value of patients’ input and supports relatively new philosophies (or rather research methods) such as public and patient involvement (PPI).

In June, I was invited to speak at the “Patient Voice in Diabetes Research” event, organized by the University College Dublin Diabetes Complications Research Centre. The researchers from the UCD aimed to ask people with diabetes about their opinions and views on the research in diabetes, and to create a working partnership between these two groups.

Prof. Catherine Godson, Director of UCD DCRC opened this event and introduced her research team to participants. Then we had a short presentation from the UCD Conway Institute researchers, who explained why patients’ involvement is so important to develop effective scientific outcomes.

I presented next and talked about the history of diabetes and research and my personal experience as a patient.

 

THE HISTORY OF DIABETES RESEARCH

We think the first written record of diabetes is the description the symptoms of diabetes as “Too great emptying of urine” in 1500 BC. So we know that diabetes has been around for a very long time. People were dying because of diabetes for centuries, and there was no treatment to save people’s lives. The research was focused on the cause and treatment for diabetes and didn’t involve people with diabetes in other roles than “patients”.

Everything has changed since the discovery of insulin (1921) by Canadian physician, Frederick Banting, and his medical student Charles Best in 1921. Insulin was given to the first human patient, Leonard Thompson on the 11th of January 1922 and since then diabetes became a chronic, not a fatal illness.

The character of diabetes has changed too, but it was (and still is) associated with the development of diabetes complications. Even when I was diagnosed (1987) the understanding and prognosis of diabetes were completely different than now. In late eighties doctors and patients were certain that every patient with diabetes will develop some diabetes related complications (i.e. retinopathy, nephropathy). Only since 1993, when conclusions from the most important (except discovery of insulin) study of diabetes were published (Diabetes Control and Complications Trial – DCCT), patients and doctors realized, that intensive diabetes control may improve the outcomes and may stop (or significantly slow down) the development of diabetes related complications. We didn’t know that before.

Efforts (in particular, diabetes education and technology used in diabetes) were now being put to improving diabetes management.

And it wasn’t a case even when I was diagnosed, I got my first blood glucose meter 3 years after (1990). Then, 9 years later, quicker and safer insulins changed how to manage diabetes from not with diet, but with carb-counting and adjusting insulin for normal eating. Since 2000, I have been using insulin pump and since 2016 – a CGM. What these technological miracles can do to improve your diabetes and quality of life!

The way in which we can self manage diabetes is so much different than a decade ago and it is not a surprise that the risk of developing diabetes related complications is lower. This is why I am certain that openness to technology and education, participation in diabetes communities (including diabetes online communities – DOC), and taking part studies and research helps us US to achieve long, healthy and “normal” life, despite having diabetes.

 

People with diabetes are the best ambassadors of diabetes

I believe it is time for us, patients, to speak loud about what we need (i.e. “Libre4all” campaign). Some – through research and social media – are speaking loud about their rights to access good quality of diabetes care and all types of medicines/technology. For example, patients aiming to improve the fair access to insulin (see T1International, another Thriveabetes 2018 speaker), as people are still dying because they can’t afford or access this life-saving medicine.

People’s stories raise the awareness of diabetes: British Prime Minister, Theresa May, the first world leader with type 1 diabetes, the global all-diabetes sports team of cyclists, triathletes and runners; Team NovoNordisk, pilots with diabetes who campaigned to modify the law to allow pilots with diabetes to fly commercial aircrafts. People with diabetes are the best ambassadors of diabetes and the outcomes of health care / technological development and research must be for them. And why should health-care professionals speak on patients behalf instead of having two-way discussion?

People with diabetes are the best ambassadors of diabetes

This is why I was excited about taking an active part in the “Patient Voice in Diabetes Research” event, and very happy to see so many other patients with diabetes there too. All participants had a chance to give their opinion and views about why they think research is important part of diabetes life, what resources would be helpful for people to become more active in this area (i.e. an online platform with announcements about the on-going research), or what areas should researchers focus on in their studies. In between two focus groups, Prof. Donal O’Shea gave a speech about the differences in diabetes care from a health-care professional’s perspective, and highlighted that patient involvement is what we need to improve the quality of diabetes, in particular in Ireland.

I am sure that the “Patient Voice in Diabetes” meeting was only the first one and I look forward to attend any other similar event. I hope that it will be open to people not only from the Greater Dublin area, but also from the whole country. Let’s get loud!

 

Thank you Kate and agree that it is time to speak up! Kate is also looking for adults with type 1 diabetes who have an interest in diabetes technology as Insulin Pumps, the Libre, CGM or the DIY Loop Artificial Pancreas, etc. Please see the note below for how to contact her.

 

RESEARCH PARTICIPANTS NEEDED

Adults with Type 1 Diabetes interested in Diabetes Technology
Location Galway, Cork & Limerick

Kate Katarzyna Gajewska, a fellow person with type 1 diabetes, is doing a research project on the barriers for adults to access insulin pumps in Ireland. Her findings have been very interesting so far and I can’t wait until she publishes them.

She has arranged focus group meetings in:

  • GALWAY 6th September
  • LIMERICK 13th September
  • CORK 17th September

Please consider attending if you are an adult with type 1 diabetes who:

1) only began using an insulin pump as an adult

2) don’t use an insulin pump but you are trying to get one

3) are using any other diabetes technology as the Libre, CGM or the DIY Loop, etc.

IF you are interested in participating please contact Kate on Email: katarzynagajewska@rcsi.ie or call/text/whatsapp 087 964 1972

PS If you can’t attend this focus group but would still like to share your story, please do get in touch and she may try to arrange a phone interview.

Leave a comment