Guest Blog by Rachel Lynch – MIACP & EUPATI Fellow

With our Patient-Centred Design Industry Workshop just around the corner on 22nd February, we thought it would be a great opportunity to invite Rachel Lynch to contribute to our guest blog this week. Rachel is a EUPATI Fellow and volunteer at FibroIreland and she participated in the UCD ENJECT Training School in 2015 where ARCH researchers hosted a workshop in conjunction with IPPOSI exploring the role of empathy in researching patient cohorts as well as the most appropriate methods to gather valuable patient-centred insights. Rachel’s experience of this event will give you a really good idea of what to expect at our workshop in February, as well as highlighting the benefits of participating at a personal and professional level.

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The UCD ENJECT Training School took place over 3 days in 2015. It focused on the Learning Health System. It featured Individual and group exercises, as well as hands-on workshops with patients and patient representative organisations. The challenges of problem identification were highlighted, whilst giving students practical experience in two key areas that are crucial to good Connected Health research – routine translation of data into knowledge (the Learning Health System) and methodological perspectives (working with patient populations).

What was your role in the workshop?

My role was that of patient and patient representative. I have Fibromyalgia, Sheurmann’s Disease and Hypermobility Syndrome and I am a volunteer group facilitator with www.fibroireland.com.  I was also on the first cohort of the EUPATI (European Patients Academy on Therapeutic Innovation) training course so this conference was an ideal opportunity to put my learning into practice. One of the many symptoms I experience is migraine. I was in a group with another migraine sufferer from the Migraine Association of Ireland. We discussed what it was like to live with migraine with researchers from different disciplines.

rachel Lynch

Connected Health is a paradigm shift looking after the individual and community health in a process that speaks to the health journey of the person throughout the entire lifespan whilst leveraging a variety of technology to do so. As a patient I had the opportunity to share my lived experience with researchers so that they could consider the best design solution for my health needs. Telling a story is a powerful tool.

What was your experience like?

It was a very positive experience. My EUPATI training went a long way to giving me the confidence to voice my perspective as it had given me a better understanding of the R&D process. The researchers were very empathetic and thoughtful in their interviewing approach. It’s been over 10 years since my diagnosis so I have had plenty of time to get used to a different ‘normal’. It was interesting to note the expressions on their faces as they listened to the list of symptoms I had to deal with on a daily basis and the impact that migraine has had on my life. It reminded me that I do indeed have a lot to deal with and validated my experience of living with an invisible illness.

The researchers took the time to feel what I felt, which will hopefully lead to empathetic actionable insight.

It’s important that researchers take the time to make sense of what people do and understand what is hidden in plain sight. Innovation happens in the mundane. The researchers took the time to feel what I felt, which will hopefully lead to empathetic actionable insight. Don’t make it big, beige or boring. Make it relevant then I can accept it, I can use it, I can want to use it and most importantly of all …I can love to use it.

The discussion work was lively and engaging. It was great to help the researchers climb the slope of enlightenment and hopefully onto the plateau of productivity.

It’s important to consider talking less about patients and more about people, which the researchers at ENJECT did. They learnt to note when information is helpful or not helpful.  I don’t want to be reminded that I am a patient. I don’t want my day taken up with inputting data. I would like the technology that is designed for me to fade into the background so I don’t have to overthink it. The discussion work was lively and engaging. It was great to help the researchers climb the slope of enlightenment and hopefully onto the plateau of productivity.

How did you and FibroIreland benefit from the workshop?

Connected Health is a paradigm shift looking after the individual and community health in a process that speaks to the health journey of the person throughout the entire lifespan whilst leveraging a variety of technology to do so. As a patient I had the opportunity to share my lived experience with researchers so that they could consider the best design solution for my health needs. Telling a story is a powerful tool. Straight reporting is static and boring and life is not static. It can be difficult to find meaning in experiencing over 30 years of chronic pain. One of the benefits for me personally is the hope that sharing my experience may lead to better innovations for other patients. I was listened to and treated respectfully. I would highly recommend to other patients that they consider taking part in such research projects as doing something useful can help a patient feel useful.

I have attended many conferences and I’ve noticed that a lot of very valuable information is often not utilised to maximum effect. The brainstorming session below contained an example of the Patient Journey. As an experienced graphic designer and counsellor, I recognised that this map of the emotional, physical and financial odyssey that a patient may go on, could help other patients process their own patient journey.

Patient Workshop

So the above session was designed into a patient friendly format, which was shared with many other patient organisations. Remember patients have skills too!

Patient Journey Infographic

FibroIreland held several focus groups and facilitated patients taking the time to process their own patient journey. This a map of a patient journey follows 5 steps

  1. Pre-diagnosis
  2. Diagnosis
  3. Adjustment
  4. Develop support network
  5. Gaining knowledge & skills – Health maintenance

It highlights challenges and questions that the patient may experience. It also charts the emotional ups and downs of learning to live with a chronic long term illness.

We asked our members…

  • How similar is it to your patient journey?
  • If you had been given something like this when you were diagnosed would you have found it helpful?

It proved to be a useful tool for patients to understand their own patient journey. We got great feedback as it helped patients process the stages of loss that can be involved with a chronic long-term diagnosis. Patients stated it would have been helpful to get this at the diagnosis stage, as it would have allowed them to see the ups and downs that may ensue and to have a realistic picture of what to expect. It helped them get a sense of which stage they were at and what they needed to do/avoid to move forward. They were also able to use it with family members to explain their illness.

Many thanks to the ARCH team for their enthusiasm and dedication with regards to patient involvement and I look forward to their next conference.

Watch a video of the ENJECT workshop below, where Mags Mullarney (CEO Move4Parkinson’s) and Hrvoje Belani (ENJECT researcher) share their experience of the patient-researcher module. 

You can contact Rachel on info@rachellynch.net and on Twitter @rachelmlynchwww.fibroireland.com | info@fibroireland.com

Find our more about our Patient-Centred Design Industry Workshop taking place on Wednesday 22nd February here.

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