Why and how to get involved in ageing research CARDI Conference, Belfast, 28 th May 2014 Overview, Roles, Language and Ethics Peter Lansley Professor Emeritus of Construction Management The University of Reading
A lesson from the past fifteen years • Involving older people as partners in ageing research – Can create a significant community of interest and support – Stimulating and exciting for the researchers as well as the parrtners – Promotes higher standards and greater achievement – Work is much more likely to be used
Roles of older people in research (1) • As a participant , getting involved with a study, for example: – being interviewed, completing questionnaires – being observed • undertaking certain everyday tasks • undertaking new or experimental tasks – giving samples, maybe after some new task
Roles of older people in research (2) • As an advisor, for example: – When a study is being developed • as a sounding board • cautiously yet proactively encouraging the study – During the study • receiving and commenting on progress reports • spotting gaps and issues which might be emerging • offering leads, contacts, facilities – When the findings are ready • advocacy to non-scientific audiences • feedback to scientific audiences
Roles of older people in research (3) • By being engaged, for example: – Attending meetings, when the findings of a study are being disseminated – Through newspapers, TV,.... – Through exhibitions, open days....
But listening and understanding - on different planets! • Language – highly technical & codified v everyday • Priorities – validity & unique contribution v applicability & comprehensive • Time scales – long term (years) v short term (months) • The way issues are addressed – framework for reasoning v life-time experience • Can lead to FRUSTRATION! • But most committees have their frustrations!
Plain speaking is important If the “lay” summary is poor then beware! Don’t budge until it is comprehensible!
Not such plain speaking from scientists • Medical and biological terms – Myocardial infarction = heart attack – Cardiopulmonary arrest = cardiac arrest – Monounsaturated fats and polyunsaturated fats = good fa ts – Trans fats or hydrogenated oils = bad fats • Research design – Protocol = a set of rules for a clinical trial – Sample size, Power, Odds ratio – Exclusion criteria – Informed consent – Triangulation, Multi-method
Plain speaking from advisors “Older people would never take exercise at the level you want to test them?” “ If the research goes well how will it benefit older people?” “You don’t need anything as complicated as that. I’ll show you how, with Parkinson’s, I put drops in my eyes.” “Don’t you know the KISS principle?” “Are you sure you won’t just be interviewing older people who are easy to reach? What about those who never go out of their homes?” “ Where do carers and families fit into the study?”
Research governance and ethics • Ethical approval needed for: – Research involving human beings or human tissue: • For example, work using: samples, questionnaires, focus groups, secondary data (collected by earlier research) – Checks on: • How participants are recruited • Safety and risk : – participants, researchers and those who may use the findings • Security and confidentiality of data • Ensuring procedures, methods and findings are transparent and can be assessed – Promoting and enhancing: • Scientific quality • good practice
Ethical approval • Ethical approval required by: – Professional bodies – Research funders • Approval given by: – Ethics committees of universities & hospitals • Gaining approval - often not straightforward
Spotting the flaws • Often “lay” advisors quickly spot the flaws at an early stage. – Some are easily fixed: • For example: proposal gave a very sensible account of how frail older people would be recruited and organised but omitted to say anything about how they would get from their homes to the research centre or about their carers! – Some aren’t: • Another example: proposal on monitoring carbon monoxide in the home!
For those who get involved: “.......but we are making progress…. the second set of exercises did seem to help my balance.” “I wish I had been able to use the (robotic) device when I was recovering from a stroke. It was so depressing laying in a hospital bed waiting for half an hour of physio once a day.” “The housing authority has used the guidance to improve lighting for people with low vision.” “It has led to an international standard. So, many thousands of people, maybe millions, are benefitting.” “I recruited ten over 80s from the working men’s club. None of them had set foot on a university before. They were fascinated.”
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