Career transition: Academia to a patient organisation

What initially started as niggling thoughts in the back of my mind (as I am sure many postdocs have) eventually resurfaced and took centre stage. I was going to leave academia. I am not a failure and I do not need to feel guilty about it, I told myself and I eventually managed to convince myself of it. But the question was where to go. 

I reached out to contacts that had left academia or that were in industries that I (or others) thought might be options. So many people loving what they had done since leaving academia – but none of it felt quite right for me.  

And then it happened. I remember it so clearly. Like a cartoon, I literally jumped out of my chair, big lightbulb metaphorically hovering over my head, and ran downstairs to tell my partner that I knew what I wanted to do. I wanted to work in a patient organisation! I wanted to use my experience, expertise, and passion to promote patient and public involvement in research and help translate research in order to empower patients. 

What followed shortly was a one-on-one career coach session where I was told that the job I was looking for did not exist in Sweden. If I wanted to work within medicine/research in a patient organisation, I should have stayed in the UK. Well, you can imagine how demoralising that was. 

I am here now to tell you that those jobs are available in Sweden. I am here to tell you that you should add it to your list of career options to explore if you are so inclined.  

So what is it I do then?  

I am currently Medicinskt Sakkunning och Forskningsansvarig (roughly translated to Medical Expert and Research Lead) at a blood cancer patient organisation (Blodcancerförbundet). Shortly, I will be moving to Reumatikerförbundet, a rheumatology patient organisation. I have loved my time at Blodcancerförbundet, but am excited to return to my area of expertise (rheumatology).  

When I joined Blodcancerförbundet, the position was new to me, but also to them. I got to help shape and set the priorities and direction of the role. My passion and much of my focus in the job has been about setting up a Patient panel, consisting of patients and carers with direct experience of blood cancers, who will act as research partners for the research funded by the organisation. I have lobbied the idea to the organisation for approval, started recruitment, written the educational workshops for the panel members, and made plans for their active involvement in reviewing grant applications and working with researchers.  

Other aspects of my role include keeping up to date with research. Get this, I get paid to read interesting research – that is the dream for me. Importantly, I then get to tell patients and the public about it. I started a research vlog where I tell people about an interesting publication in the field. I preface it with some background information about the disease, treatment, method, or other aspect and try to make it easily understandable. With time, there would also be the option to write articles for their members’ magazine.  

There is a lot of collaboration and networking – meetings with medical advisors or patient engagement leads at pharmaceutical companies where we work together on producing educational videos for patients, campaigns to increase awareness or lobby for better access to new and innovative treatments, or discuss potential joint projects (including some research projects). I sit on the steering committee for the blood cancer quality registers and am thereby able to represent the voice of the organisation and the patients we work for. I answer queries from our members – the community is thirsty for knowledge, particularly in the face of the COVID pandemic, where little is still known specifically regarding those affected by blood cancer.  

For me, the move to a patient organisation was eye-opening. I spent my PhD reading hundreds of clinical trial publications, but had never stopped to think about the next step. The crucial step that comes from translating knowledge into practice. From day one at the patient organisation, I learned that the work is not done on completion of the RCT. Not even following European Medicines Agency approval. The key is ensuring that patients have access to these new and effective treatments in clinical practice. All too often the costs are prohibitive and the treatments are not made readily available. This job made me see the reality of it and the importance of the lobbying that is done to ensure fairer and better healthcare.  

I don’t mean to say that there haven’t been difficulties…

I have struggled with impostor syndrome in acting as a medical expert in a field I had not researched in and only very briefly worked in as a junior doctor. I am used to being bottom of the clinical or academic hierarchy – surrounded by colleagues that seemingly know more about the topic. But what I have realised is that although I cannot recite the treatment guidelines for acute myeloid leukaemia, I do actually know a fair bit.

Importantly, my research background has given me the skills to find, understand, and communicate the answers.

What makes it worthwhile is the gratitude expressed by my coworkers and patients. That fuzzy feeling when I get an email from a member thanking me for making and sharing a short video on a particular topic – it reminds me why making the move from academia to a patient organisation was the right choice for me. 

Why am I telling you all this?

Partly because I wish I had this information available when I was considering my career options. I was fortunate to have come from a research post where I worked with patient organisations, so knew there was potential there. I know it isn’t a common career path and I know there aren’t many of these jobs going around. And that leads me to the second reason for posting this – as I am making the move from a blood cancer to a rheumatology patient organisation, there is an opportunity there to take over what I have started. So if you are interested, seize the moment and apply (if you speak Swedish and have clinical or research experience in haematology).


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