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Robert Joyce is a patient with multiple sclerosis (MS) who has recently been involved in a feasibility trial. An Open Letter reflecting on this is published on HRB Open Research. In this blog, he explains how Public and Patient Involvement (PPI) changed the trial design and improved its accessibility for patients. Read on to find out how embedded patient researchers can amplify the patient voice to transform research and healthcare.

Throughout most of medical history, there has been a paternalistic approach when developing new medicines and therapies. Many researchers and doctors felt they knew better than the patient, given their training and lack of emotional bias. However, this method isn’t always the best for the person living with the illness.

As a patient, what I need to help me live with MS could differ to what the researcher thinks I need. My quality of life could improve if I feel less fatigue, less pain, or even if I can hold the hand of my partner as we talk. Everyone has different motivators. Including the patient in medical discourse can help researchers understand what we want, rather than giving us something they think we need.

Why take a patient-centred approach?

In my role as a patient-researcher, I was able to change the plans for the trial I’m working on to make it more suitable for people living with MS. Some of the issues discussed were things the research team had not considered until I raised them.

I would like to help this happen more often in research. PPI provides a means of ensuring that researchers’ work, regardless of theory and convention, is practically appropriate, accessible, and feasible for their patient cohort. 

Planning a new intervention

The Cognitive Occupation-Based program for people with Multiple Sclerosis (COB-MS) is a cognitive rehabilitation intervention focused on people with MS. It takes a holistic, individualised approach, focusing on the daily lives of MS patients.

By measuring and teaching through occupational participation it could address the wide-ranging symptoms and functional difficulties that present in MS, including:

• Maintaining employment
• Social activities
• Managing the home
• Self-care

The COB-MS research program aims to evaluate its feasibility and efficacy.

Amplifying the patient voice

As a person living with MS and being part of the Trial Management Group, I must be the voice of all patients who have this disease. Through my blog, podcast, social media, and various closed discussion groups, I have built connections with the MS community both here in Ireland and internationally.  

It is important to explain to someone who has not lived with this condition what it is like. This is challenging, as others will never be able to feel the world with my hands, walk with my feet or understand how pain can colour every action.

Sharing my individual experience, my understanding of other people’s experience, and knowledge of the Patient Advisory Panel, helped us to collaborate effectively with other researchers on the team. By listening and respecting each other we created a meaningful relationship. All these aspects are key to a successful partnership.

Understanding the impact of an illness

Researchers make huge efforts to understand an illness and its impact on a patient, but unless you have the illness you will never know its full impact. This can lead to a trial implementing processes or using materials which are not suitable for someone living with the condition. By having a person who lives with the illness involved with the trial, we can get a better perspective on what is really needed.

In the COB-MS trial it was important to have the embedded patient-researcher employed part-time as part of the research team from day 1. In fact, I am now the longest serving researcher on the team! The issues that are important to people with MS continue throughout the lifecycle of the trial – from planning and development, all the way through to dissemination and implementation.

The PPI contributions can vary from the type of language used by the research team, to what tests and materials are used in the trial. For example, assessment can be adapted to suit the participants’ needs, so that they don’t lose interest due to fatigue or cognitive issues.  

This has a positive impact, both for the people taking part in the trial, and the trial itself. This may help create a more appropriate ‘research setting’ for the participant, which is vital for suitably engaging participants in patient-centred trials like COB-MS.

Telling my story adds value for research teams

When we were recruiting participants with MS to take part in the trial, I chose to publicly share my story of MS and its impact on me. I think hearing directly from a patient makes it easier to connect with potential participants. People want to know how it feels, the emotion of an illness. As a result, national and local press and radio interviewed me, which helped us recruit participants.

This also facilitated a more open and honest discussion with participants. When carrying out post-intervention evaluation interviews with them, one participant commented that it made it easier for them to share their experience. I know what it feels like to live with this disease, so no lengthy explanations were required, as they felt I know what it is like. This created a more open conversation/interview, which will benefit this study, and the larger (definitive trial) study, if it progresses.

Making trial materials fit for purpose

Imagine you are a participant in a trial for a new therapy. You arrive to the first session and you are given a manual you need to engage with regularly. However, the poor sensation in your fingertips makes it difficult to get grip on the pages. The binding doesn’t allow the booklet to naturally stay flat on the table, so you need to concentrate on holding the booklet open, because your hands and arms shake.

I understood the mechanical and cognitive difficulties. This meant we could avoid potential problems in the COB-MS trial before they happened. The format of the manual was changed before even one was printed, saving cost to the research team and undue frustration it would have caused participants. Something which might seem small to a healthy person can have significantly more consequences to someone living with the studied medical condition.

Improving quality of life

My belief is that all health-focused research is being undertaken to improve the quality of life of the patient and relevant members of the public. By including PPI in the creation of research questions, trial design, implementation, and dissemination of results, we create a collaborative environment, where we can better evaluate potential improvements.

Building strong connections with the community

Researchers should connect with the patient community they would like to serve. This could be through a Patient Representative Organisation or through social media channels or local community groups. By getting to know people living with the illness and developing a relationship, it fosters trust.  This enables better understanding of a group’s “pain points”, so researchers can work with them to develop more appropriate research questions.

I’d recommend employing a co-collaborator or embedded patient-researcher from this community to help the study design process. Ideally, they should have a strong connection with the community they represent to share a more inclusive Patient Advisory Panel which will further add diversity to important decisions.

Making patient-focused research publicly available

Patients want to know what is being studied and what’s being found. This research is usually published in journals that require a subscription, which significantly hinders the accessibility of research.

HRB Open Research is available to everyone, without restriction. As a result, so too was our Open Letter. Furthermore, I was able to share this on social media to my MS Communities and the wider public who might otherwise not know about it.

Building trust between the research community and the public

I hope that the article will help the further development of PPI and its use in research, by sharing it an accessible manner for all to see. There’s also the added hope that this article, once shared through non-academic channels, will highlight the positive collaboration between patients and researchers, which may further help improve trust in the scientific process by non-researchers.

The public and patients can feel apprehensive about research because they don’t necessarily understand what is being done. But public and patient involvement helps build bridges between the two communities – connecting researchers with the public. In this way, PPI can become a translator of research, removing its mystery and instilling trust.

Read the Open Letter on HRB Open Research to find out more about the impact of including patients in all stages of the research cycle. You’ll gain the perspectives of team members, Sinéad M. Hynes (Principal investigator) and Christopher Dwyer (Post-doctoral researcher) who share their thoughts on PPI and encourage others to collaborate.