2021 Patient Advocacy & Me, what an amazing year

2021 has been an eventful year. The COVID pandemic is still around and it has changed so many lives, for good and bad. For now, we do not know what further impact it will have, but I know its impact on me. In this post, I am going to share how it has helped shape my future goals and the way it changed my life in 2021.

Chronic illnesses, like Multiple Sclerosis, changes lives, often coming with pain, fatigue and social isolation. The healthy world doesn’t understand their impact. For me, it meant I lost the work I once could do. (see my post Transition Day) My MS played a role, and so did my Persistent Post Traumatic Headaches. No longer could I use my brain to do complex things and my mobility problems have meant I cannot use the strength of my body. This is a massive change, and it has taken time for me to adapt. Along the way, I have had my grey days, momentary improvements, and even some joy. This last year has seen so much change. 

Starting a blog in 2017

The seeds of this were planted by my now wife back in 2017 when I started this blog. The sharing of my life, publicly, was such a big step. I had to expose who I really am, for the world to see I am not always strong. As part of my blog, I have also shared what new things I have tried to help me manage my life, things like Sativex, Functional Electrical Stimulation and meditation/journaling. Along the way, I have tried diets, explored new research and added new medications. Some things helped, and others didn’t, and this is not unique for people living with MS. We are always hopeful the next thing will be the breakthrough. Often it is just a mirage of hope, dashing our spirits.

Becoming a researcher

In July 2019, they employed me as an Assistant Researcher on the COB-MS trial (www.cob-ms.com), which is a new therapy taught by an occupational therapist, to help people living with MS with cognitive problems. This is very common for people living with this disease, not being able to remember something said 10 minutes ago, finding books difficult to follow or to engage in a conversation. My role in the trial is to be the voice of the patient, looking at every activity of the research to make sure it is suitable for the people learning the therapy.

My role morphed into something more than that as the trial progressed. I have written a Patient Information Leaflet, edited the Newsletter, interviewed and helped to recruit people for the study. Many more tasks than was originally envisioned, so now I am no longer an Assistant Researcher, but an Embedded Patient Researcher. Now I am a co-author in four research papers and the lead author of a peer reviewed Open Letter. Being peer reviewed is a big thing in research. Experts in the topic written about reading your article and highlight anything wrong with it. If you misinterpret the data, use a false argument, or state something which is incorrect, are all thing they look at. After some queries with my letter by the reviewers, and me fixing these omissions, I got my three ticks. You can read the letter here.

The Health Research Board (HRB), which uses Irish taxpayers’ money, funds the work I do at the university. One reason the COB-MS trial employed me was because of the HRB’s funding of PPI Ignite, an organisation whose goal is to include patients and the public in research (PPI = Patient & Public Involvement). The HRB & PPI Ignite created the right environment for me to be employed. It is amazing how making one decision can alter so much. In Ireland, the environment is right for more involvement of the public in research and I believe it will improve the quality of research.

The Open Letter has been well received, being viewed 452 times since they originally published it in January of this tear. Following from this success, HRB Open Research asked us to write a blog post, which you can read here. Following from this, Dr Claire O’Connell did a video interview with me and they include it in the HRB’s Ezine, which was just published. 

Patient Expert and influencing policy

Also, during 2021, I completed my EUPATI training to be a Patient Expert. This is a foundational course, which has taught me about the complexity of research. From this I have been able to widen my advocacy to being a member of the IPPOSI ENP (EUPATI National Platform) and being an advisor for the Health Service Executive (HSE) Research & Development PPI Reference Group and the HSE’s Research Governance Implementation Working Group. The opportunity to share my patient experience to improve the quality of our national health service. Patients have a role in service improvement!

During the year I have also worked on the PharmaLedger project, which is developing a method of replacing the information sheets which are included in every medicine package with an easier to use app on your phone. It will hopefully help patients use their medicine correctly and at the right time. Improving health outcomes in the process. You can read more about this here, and you can hear me speak about PharmaLedger here.

There are several other projects which I done over the year, which I will write about in another post. The COVID pandemic has made much of this work much easier for me to do, as I don’t have to travel. My office, or more correctly “My Cave”, is where I can talk to people all around the world, with the power of the Internet. The world is now accessible to me for the advocacy work I do. It has also given me purpose for my days and weeks. In late November, I hosted a webinar with Dr Jonathan Egan about this topic for MS Ireland. Having a reason to get up in the morning is extremely helpful for my mental health. 

The future looks bright

Patient advocacy takes many forms, from changing public perception of an illness to improving the quality of life of people living with chronic illness. It has been responsible for a change in the delivery of medicine, as now it is becoming patient inclusive. We, the sick, now have a voice, a seat at the table, where we can be part of the decision, not a passive recipient.

2022 will see me continuing this with a keynote presentation at the Patients as Partners Europe Conference on January 24, 2022, as my first speaking engagement of the year. At this I will share some of my experiences as an Embedded Patient Researcher. (Learn more about the conference here https://theconferenceforum.org/conferences/patients-as-partners-europe/overview/).

This year, above all others, has shown me how I can turn a negative, Secondary Progressive MS, into a positive. I use my life to show to the healthy the impact of disease on a person’s life and what needs to be done to improve our quality of life by using the knowledge of the patient. What a turnaround.

I would like to wish all my readers a fantastic festive break and happy New Year!!

What was 2021 like for you? Did the pandemic change your life, and in what way? Let me know in the comments below.