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Table 1 Meeting Statements

From: Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy

Which of the following do you most identify as?a
Easy to read information in waiting rooms is an effective way to communicate to patients
If I were a patient, I would read a one-page summary about research projects
TVN needs to play a central role in providing guidance and support for patient engagement in research
We need to educate health care organizations about research and the importance of engagement
We need a flexible engagement model (technology supported/money and time to support participation/go to the grail citizen)
Research is needed into why/how the frail elder becomes engaged in research
Frail elders do not always identify as frail
The voice of the frail elder is not always represented by the voice of the caregiver
We need to consider different venues outside the usual and need for co-presenters (researcher + frail citizen)
We need to consider alternative sources of information
TVN needs to provide resources/experts to researchers that help them to effectively conduct person-centred research
Need research measures/outcomes are that are meaningful to frail citizens (e.g., pain/function/good death/Quality of Life)
Research teams should have a citizen leader in addition to a scientific leader
TVN should support citizens/family caregivers to mentor each other in the research process
TVN needs to train researchers about how to engage frail citizens effectively
Engagement of frail elderly in health and social organizations should be mandated
Continuity of care should be supported by electronic health records and other tools to communicate decisions between care settings
TVN needs to create tools and education packages for health care providers on ways to meaningfully engage frail elderly and caregivers
TVN and advocates of frail elderly issues should make the issue of frailty a priority at local/regional levels so that it can have more political influence
  1. Responses to questions were structured as follows, unless stated otherwise: Rate the extent to which you agree with the below statement. Strongly agree; agree; neutral; disagree; strongly disagree
  2. aWhich of the following do you most identify as? Advocacy group representative; citizen or volunteer caregiver; health care provider or administrator; policy person; researcher; other