Guest Blog- Derek Stewart OBE, Patient Advocate and Honorary Professor, NUI Galway


Cooperating and Collaborating

I recently had the great pleasure of talking with the members of Health Research Charities Ireland.

The presentation was about the value of us, as patients and members of the public, getting interested in and becoming actively involved with researchers working in laboratories.

I don’t mean that we patients and public doing the actual science as such. Personally, I prefer to leave that to those who know what they are doing.

I am talking here about helping researchers realise the relevance of their work for ordinary people; as a means of maintaining openness and trust with science; to improve the way science is communicated and explained; and to add value to the integrity of research. It is often reduced to the initials PPI meaning Patient, Public Involvement.

Becoming actively involved with aspects of biomedical or pre-clinical research, helps improves our knowledge and understanding, as patients, partners and relatives, about both the science and the way research is conducted. This helps us, I believe, ask better questions for better health. It helps us spot fake news or poor reporting of research.

I hope that soon, more people will ask about health research when they meet with their nurses and doctors in both primary care and hospital consultations.

The whole of Ireland is working in a strong collaborative manner to make this happen through partnerships between charities, patients and many research organisations. These collaborations are often described in the manner of co-design and co-production – an agreed set of principles and values that underpin the relationship.

Charities are often our first port of call as a patient. The confusion we have from diagnosis, the struggle to take in the new language, the numerous questions. Health Research Charities are that vital link in that chain of absorption, learning and understanding.

The questions I would encourage people to ask are…

  • Is this the best evidenced based care or treatment I am receiving?
  • Has there been a review of the different pieces of the evidence?
  • Is there a summary of the latest in clear, plain language?
  • Are there studies I might like to consider taking part in?
  • How active in research is this clinic or department?

There is evidence to suggest that people treated in hospitals that have a good research culture have better outcomes. It is, therefore, in all our interest to be asking about research.

Helping patients and families to ask these questions as well as helping answer them is a fundamental and valuable role for all health research charities.

As a patient we are unlikely to ask about the world of research without the great assistance of those member charities of the HRCI. They are so often our first port of call.

The opportunities to have your say, offer a perspective, ask a question or to chat with researchers in Ireland has never been better. The National PPI ignite Network, funded by the Health Research Board and the Irish Research Council, can introduce you to health research close to you or across the whole island. You can become actively involved in almost as little or as much as you want.

If you are interested in becoming actively involved with the science, the laboratory side of things then these blog posts I wrote for the presentation might be interesting.

About: Derek Stewart is a former teacher who has become a patient advocate especially for involvement in health research. He was made an Honorary Professor at NUI Galway and is fully supportive of the work of PPI Ignite Network and Evidence Synthesis Ireland (ESI).