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Co-developing training for researchers with patient involvement

28 April 2021 | Helen Craig
How a translational research training resource was co-developed for researchers with patients and members of the public.

This blog has been co-written by Helen Craig (Public Engagement Manager, Life and Medical Sciences at UCL), Kim Gurwitz (Translational Training Manager, UCL), Linda von Neree (PPI Lead, UCL), and Anna Mamwell (Patient and Public Research Panel member, UCL).   

Helen is currently on secondment with the UCLPartners PPIE team. It was originally published on the UCL Public engagement blog.

Graphic slides with a dark blue background with an image of Kim in the top right corner. There is a text box in the centre with a blue and white background and speech marks. Text says 'A No-brainer! It was a no-brainer to develop a training resource about stakeholder engagement together with a key stakeholder group for translational research, patients and members of the public.' Another textbox with a blue background and white text says; Kim Gurwitz. Translational Training Manager, UCL Academic Careers Office'

Working together

ACCELERATE is UCL’s translational research training programme (a collaboration between the UCL Academic Careers Office and UCL Translational Research Office) offering technical training, skills development, and encouraging innovative thinking for researchers wanting to create impact with their research in healthcare. Wanting to include stakeholder engagement as a key component of ACCELERATE, Kim invited Helen, UCL Public Engagement Manager for the School of Life and Medical Sciences (SLMS), to help develop the resource, and reached out to Linda, who leads the voluntary patient and public researcher panel at the UCL Blood and Transplant Research Unit (BTRU). The team was complete when Anna and other members of the patient and public panel came on board. It is an example of why working in a networked way, and forging links with patients early on, is so important for stakeholder input.

Graphic text slide with a blue and green background. Text in white lettering says 'ACCELERATE. Why is stakeholder engagement so important for translational research? Stakeholder engagement holds many benefits to translational research. Engagement with those who may be impacted or who have the experience to comment ensures reseach is not only fit for purpose but also better, relevant, acceptable,, and appropriate for society's needs.

The team then set out with the objective of highlighting why stakeholders engage with research. The starting point was a document drawn up some years previously by UCL’s Public Engagement team after talking with researchers and members of the public about why they engaged. The team, together with Anna and other panel members, began adding and tweaking. It rapidly became apparent that the original was out of date and lacked current thinking and procedures. It proved to Helen that training should never be ‘static’ but always open to new inputs and fresh perspectives.

A graphic image with a dark blue background and image of Helen craig in the top right corner. A central textbox with a blue and white background and black text says 'Who trains the trainers? That's the question that was rattling around my mind as I saw just how much better the training had become thanks to the input of Anna and the members of the panel - compared to the first draft! It felts like we were learning, even while writing training ourselves.' A textbox to the right with a light blue background and white text says 'Helen Craig, Public Engagement Officer, School of Life & Medical Sciences, UCL Culture'.

Through working together, the document has developed and evolved, and all gained new insights. Enrichments due to patient and public input were many, but major changes included:

  •  A much stronger emphasis on how incorporating patient and public engagement ultimately leads to better, more relevant, and appropriate research.
  •  More from the patient perspective – the previous resource hadn’t captured the empowerment that can be felt by being involved in research. It gives a ‘voice’ to powerful personal experience; it contributes authenticity to research protocols. There are strong altruistic drivers that lead to patients sharing their experience, skills, and knowledge.
  • More awareness of tone when writing and how this may influence readership and deflate the spirit. Jargon, hackneyed use of overworked phrases or flippancy, such as, ‘engagement is fun!’ do not inspire or involve. It is important to be thoughtful about language and the impact it may have on those who read it.

The final training resource

The ACCELERATE stakeholder engagement training resource now highlights the many benefits of engagement for researchers, patients, carers, and members of the public. Its development has been an outstanding example of how much is gained by reaching out and including the perspectives of all stakeholders.

The resource highlights different motivations and drivers for engaging in translational research from the viewpoint of researchers, ethics, research quality, industry, and legal considerations, and now including patient stakeholders.

Graphic image with green and black background and white text that says 'there are various motivations driving engagement with key stakeholders in translational research. Some of these are: Researcher Drivers. Develop and co-create knowledge and understanding through mutual learning. Improve User experience. Gain awareness of broader contexts of research and the opportunity to engage with a wide variety of individuals. Career development - effective public engagement and involvement experience are increasingly important for career progression. Can improve self worth, empowerment, and personal motivation for work in a role that can feel isolating.

For the full resource, you can check out the ACCELERATE webpage for ‘Involving patients and the public in research’.

Graphic image with a dark blue background and image of Linda in the top right corner. Below this is a light blue textbox with white text saying ' Linda von Neree, Patient & Public Involvement Lead, PTRU in Stem Cells & Immunatherapies at UCL.' Another textbox to the left and at the centre is white and blue with black text that says 'a brilliant example! This work is a brilliant example: Working with patients, carers and members of the public allows you to gain valuable insights beyond your own knowledge'.

The importance of building relationships, especially for translational research

In lab-based and early translational research, involving patients, carers, and members of the public is not yet standard and can be viewed as challenging. But the aim of medical research is to address unmet needs and health issues in our society at large – so patients and public groups are key stakeholders. However brilliant research ideas may seem in a vacuum, complementing them with the perspectives of patients, carers, and the public makes them more relevant.

Including various perspectives often starts with building relationships and having conversations. The first step is reaching out to those whose perspectives you wish to learn about. This connection in itself can be the aim for involvement in preclinical research as you learn from perspectives and questions that you may have never previously considered and gain valuable insights into current work and development for clinical practice.

It’s not difficult if you work one step at a time. Many patients are interested to hear about ongoing research for their condition and to get involved in it. Patient and public involvement in research is all about relationship building and mutual learning, so why wouldn’t you chat about your research and learn about the perspectives of patients and members of the public on it in the future?

Engaging early on with the target audience can have many benefits as well as save you time and money in the future. It’s about a small investment of time that accrues a beneficial long term reward.

Hear Anna’s perspective – Why stakeholder engagement matters even in early translational research and what patients bring to the table!

Why patients want you to engage:

As patients, we bring first-hand, lived experience of conditions that translational research strives to tackle, in my case blood cancer (Acute Myeloid Leukaemia). I have a unique perspective that cannot be learnt or taught and because of my patient advocacy work, I’m also able to add valuable insights on behalf of others in a similar position. We are experts in what it’s actually like to live with a condition and receive treatments, therefore, we can highlight problem areas and suggest ways of mitigating them which may not have been considered.

Translational research aims to save lives, prolong lives, and improve quality of life which is something patients who get involved are passionate about because of their experiences. They fully understand how important research is and have no agenda other than the desire to give honest, constructive, and trustworthy feedback as well as help disseminate information. Patients and public members bring many useful links in addition to their own valuable skills from their professional backgrounds.

So why are patients only seen as a ‘statistic’ or ‘problem to solve or treat’? Patients actually possess a wealth of knowledge and need to be acknowledged as valuable partners. Having us involved in research helps to give reassurance to patients who may be considering taking part in a clinical trial and to highlight catch possible issues or concerns early. What are you waiting for?! ?

Graphic image with a dark blue background and image of Anna in the top right corner. Below is a light blue textbox with white text saying ' Anna Mamwell, Member of Patient & Public Research Panel, BTRU in Stem Cells & Immunotherapies at UCL'. To the left of this and at the centre is white and blue textbox with black text saying 'Why engage patients as key stakeholders? Simply because patients ARE key stakeholders. Many are experts in their disease & at living with it. They what it's like to receive these treatments in reality, rather than in principle. Engagement early on is key to make sure future treatments are translated well into practice & patients can often identify feasibility issues early on. Patients want these treatments to work well for others because they know first-hand that research saves lives and improves lives.'

Main take-home point and next steps

In essence, patient and public involvement in research is all about building relationships and mutual learning. It starts with a conversation, which drives learning and new insights leading to the multiple benefits highlighted in the ACCELERATE stakeholder engagement training resource. Just like us, you’ll find that training, research, and future treatments can only be improved through involving people who are ultimately to benefit from it.

Explore the below opportunities for engaging and involving patients and the public in your research: