Abstract
Demographic change has increased the need for research on healthcare for older people. Recently there has been a growing awareness that research might benefit from actively involving patients and the public in study design and conduct. Besides empowering patients and democratizing research, involvement enhances the quality of research and the development of equitable healthcare solutions. Little is known about how to involve older people. This review aims to support scientists intending to involve older people in health research by systematically identifying and describing studies involving older people and analyzing associated facilitators and challenges. Old people were operationalized as people living with old-age-related conditions. We conducted a systematic search in PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane library for the period 2007 to July 2017 and also manually searched reference lists of the nine retrieved articles and other relevant sources. While involvement of older people in research is feasible, specific challenges related to this group need be taken into account. Strategies to enhance effective involvement comprise a thoughtful choice of location, use of visualization and accessible communication, building good relationships and flexible approaches. Further research is needed on the involvement of people in care homes or with vision, hearing or mobility limitations.
Highlights
IntroductionHealthcare for older people is gaining more importance
Due to demographic change, healthcare for older people is gaining more importance.the need for health research that focuses on older people is increasing
We found a range of conditions that are highly relevant for older people [21,22] based on which we focused on six conditions that can possibly induce additional challenges for patient and public involvement (PPI): people with dementia, frailty, people in need of care who live in a nursing home, people with reduced mobility, as well as people with advanced hearing or visual impairments
Summary
Healthcare for older people is gaining more importance. The need for health research that focuses on older people is increasing. In the last years there has been a growing awareness that patients and the public should be more actively involved in the design, conduct and dissemination of health-related studies [1,2]. It has been argued that patient and public involvement (PPI) leads to a democratization of the research process and supports the empowerment of patients, especially of the overlooked [1–6]. PPI enhances the development of equitable healthcare solutions, changes health outcomes, and is a prerequisite for a patient-centered health care [2,7,8]. While there is still no unified definition of PPI, INVOLVE, the national advisory group to the National Health System (NHS) in the United Kingdom (UK), describes involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” [9]
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