An Advocate for Patient Inclusion in Research
Overcoming Structural Obstacles to Patient Involvement in Research
Patient advocates have learned to manage the obstacles faced when trying to engage in research. Some challenges faced are meetings held in buildings which are not designed for accessibility, or not being compensated for our knowledge, and even overcoming researcher bias.
We encounter these all the time. However, there are some obstacles which are hidden from view, structural rules which, maybe unintentionally, deny some people from using their voice.
In 2019, a feasibility study (www.cob-ms.com) employed me as a Research Assistant to help with cognition challenges people with multiple sclerosis (MS) face. Having lived with MS for nearly 30 years, I felt I was suitable for this role. I was getting a social welfare support (Disability Allowance) because I could not work in the traditional sense. Poor mobility, chronic pain, fatigue, and some cognitive issues were some symptoms I had to manage daily. This financial support allowed me to do some remedial work. Over the three years of being involved in this study, my role expanded, with my title changing to Embedded Patient Researcher. I could see firsthand the benefit of having the patient fully involved in the research process.
This study finished mid-2022, and I was a co-applicant for the definitive trial of this therapy. However, a decision on funding was still outstanding, and I was no longer in receipt of Disability Allowance. Work was not possible for me, and so I applied for, and was awarded, Invalidity Pension. This stabilized my income, and I thought I might do some PPI work. The rules of this income support stated I could not do any paid or voluntary work, unless I got permission from the Department of Social Protection. When they asked me to speak at an online conference on PPI, I asked for permission to speak for 10 minutes. I got permission, but this came with a condition:
The threat of a review was too much for me, and so I decided not to speak. A structural obstacle silenced my voice. I could not believe this could be true and raised awareness of the problem. Because of my previous PPI activity, I had connections in different parts of the PPI community and also some contacts in government.
I contacted PPI Ignite to let them know I could no longer be a member of their PPI Advisory Panel because of this restriction. Similarly, I contacted IPPOSI (www.ipposi.ie) and the HSE (https://hseresearch.ie/patient-and-public-involvement-in-research/) to let them know of this issue. None of these organisations were aware of this problem.
To further create awareness, I had a question raised in the Seanad, the upper house of the Irish parliament (https://www.kildarestreet.com/sendebates/?id=2023-02-28a.77&s=Maria+Byrne#g101). There was disbelief that this was a problem. What made little sense was that the Department of Health was promoting PPI in research through the HRB, and the Department of Social Protection was blocking this policy.
A working group was formed to make a presentation to the department. This included IPPOSI, PPI Ignite, HSE, HRCI and 2 recipients of Invalidity Pension. The process was slow, and there were several obstacles preventing change in every payment. However, the rules changed in November 2025, and the Operational Guidelines of Invalidity Pension (https://www.gov.ie/en/department-of-social-protection/publications/operational-guidelines-invalidity-pension/) added the following text.
Patient and Public Involvement in Research (PPI)
Patient and Public Involvement (PPI) in the health sector is consistent with the conditions of the Invalidity Pension scheme. Given the value of PPI, Invalidity Pension Claimants may take part in PPI activities. Prior to commencing, Invalidity Pension Claimants must notify the Department with details of their activity(s) and any payments they may receive under their engagement, to ensure their Invalidity Pension payment is not impacted.
Since raising this issue, we have learned that this isn’t just an Irish problem. Many countries around the world have prevented those in receipt of disability payments from using their voice. We are now trying to find out what these obstacles are and if there is a way of removing them. For PPI to be most effective, we must allow all voices to be heard. Excluding any group of people is not right. We cannot have a situation where the only patient voices to be heard in health research are those of people who are financially independent. It can be argued recipients of social welfare are more likely to use public health systems, and these are the people who should be central to reform of our health systems.