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  1. Research article

    Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: an explorative study to gain insights into perspectives on future research

    Ultrasound examinations during pregnancy have led to an increased number of detected heart defects in fetuses. Pregnant women and their partners are often unprepared for these news, and experience several diff...

    Tommy Carlsson, Ulla Melander Marttala, Barbro Wadensten, Gunnar Bergman and Elisabet Mattsson

    Research Involvement and Engagement 2016 2:35

    Published on: 15 December 2016

  2. Research article

    Exploring the motivations of patients with type 2 diabetes to participate in clinical trials: a qualitative analysis

    Certain patient groups are reluctant to engage with clinical research and consequently findings are not always truly representative of the wider population. With the emphasis on evidence-based clinical practic...

    Stephanie Estcourt, Jill Epton, Tom Epton, Bijay Vaidya and Mark Daly

    Research Involvement and Engagement 2016 2:34

    Published on: 12 December 2016

  3. Research article

    Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe

    PLM is an online platform that provides tools for individuals to track their health and connect with other patients and while PLM has invited patients to participate in various research projects throughout the...

    Meaghan Bradley, Julia Braverman, Magdalena Harrington and Paul Wicks

    Research Involvement and Engagement 2016 2:33

    Published on: 9 December 2016

  4. Review article

    Patient and public involvement in Paediatric Intensive Care research: considerations, challenges and facilitating factors

    Paediatric Intensive Care (PIC) provides care to extremely ill children. Research in this area can be difficult because children are often too sick to discuss being involved in a study and parents are too upse...

    J. C. Menzies, K. P. Morris, H. P. Duncan and J. F. Marriott

    Research Involvement and Engagement 2016 2:32

    Published on: 7 November 2016

  5. Methodology

    Determining priorities for research to improve fundamental care on hospital wards

    The aim of this project was to find out the priorities for research that could improve fundamental care. ‘Fundamental care’ covers all aspects of basic care in hospital wards, such as helping with core physica...

    Jane Ball, Claire Ballinger, Anya De Iongh, Chiara Dall’Ora, Sally Crowe and Peter Griffiths

    Research Involvement and Engagement 2016 2:31

    Published on: 12 October 2016

  6. Research article

    “Exploring knowledge-user experiences in integrated knowledge translation: a biomedical investigation of the causes and consequences of food allergy”

    Food allergy is a serious public health problem in Canada and other high-income countries, as it is potentially life threatening and severely impacts the quality of life for individuals and their families. Yet...

    Jenna Dixon, Susan J. Elliott and Ann E. Clarke

    Research Involvement and Engagement 2016 2:27

    Published on: 1 September 2016

  7. Methodology

    Keeping it credible in cohort multiple Randomised Controlled Trials: the Community Ageing Research 75+ (CARE 75+) study model of patient and public involvement and engagement

    There are well documented benefits to involving patients and the public in research. However, there is little research published about their involvement in large complex studies such as cohort multiple Randomi...

    Anne Heaven, Lesley Brown, Marilyn Foster and Andrew Clegg

    Research Involvement and Engagement 2016 2:30

    Published on: 30 August 2016

  8. Research article

    Lay involvement in the analysis of qualitative data in health services research: a descriptive study

    There is a consensus that patients and the public should be involved in research in a meaningful way. However, to date, lay people have been mostly involved in developing research ideas and commenting on patie...

    S. Garfield, S. Jheeta, F. Husson, A. Jacklin, A. Bischler, C. Norton and B. D. Franklin

    Research Involvement and Engagement 2016 2:29

    Published on: 20 August 2016

  9. Research article

    Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design

    For the elderly to get the care and services they need, they may need to make the difficult decision about staying in their home or moving to another home. Many other people may be involved in their care too (...

    Mirjam M. Garvelink, Julie Emond, Matthew Menear, Nathalie Brière, Adriana Freitas, Laura Boland, Maria Margarita Becerra Perez, Louisa Blair, Dawn Stacey and France Légaré

    Research Involvement and Engagement 2016 2:26

    Published on: 19 July 2016

  10. Research article

    What’s in a “research passport”? A collaborative autoethnography of institutional approvals in public involvement in research

    The article analyses the process of securing permissions for members of the public (we refer to them as “research partners”) and academics involved in a qualitative study of public involvement in research (PIR...

    Vito Laterza, David Evans, Rosemary Davies, Christine Donald and Cathy Rice

    Research Involvement and Engagement 2016 2:24

    Published on: 22 June 2016

  11. Review article

    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

    The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a p...

    Jayna Holroyd-Leduc, Joyce Resin, Lisa Ashley, Doris Barwich, Jacobi Elliott, Paul Huras, France Légaré, Megan Mahoney, Alies Maybee, Heather McNeil, Daryl Pullman, Richard Sawatzky, Paul Stolee and John Muscedere

    Research Involvement and Engagement 2016 2:23

    Published on: 17 June 2016

  12. Protocol

    Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People’s Opinions Underpinning Rheumatology Research - YOURR project)

    Involving young people in research about their health is increasingly recognized as being important to make sure that research is focused more on the needs of young people. However, at present, ideas about wha...

    Suzanne Parsons, Kate Dack, Bella Starling, Wendy Thomson and Janet E. McDonagh

    Research Involvement and Engagement 2016 2:22

    Published on: 11 June 2016

  13. Research article

    Patients’ perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH Common Drug Review

    In Canada, the CADTH Common Drug Review helps ensure that scarce health care resources are used to fund the most effective drugs. Clinicians, researchers, payers, and patients all have important, but potential...

    Sarah Berglas, Lauren Jutai, Gail MacKean and Laura Weeks

    Research Involvement and Engagement 2016 2:21

    Published on: 7 June 2016

  14. Protocol

    The Ottawa Citizen Engagement and Action Model (OCEAM): A Citizen engagement Strategy Operationalized Through The Participatory Research in Ottawa, Management and Point-of-care of Tobacco (PROMPT) Study

    The PROMPT study is a community-based research project designed to understand the factors which affect smoking as well as ways to manage, reduce and quit smoking among people who use drugs in Ottawa. There is ...

    Smita Pakhale, Tina Kaur, Kelly Florence, Tiffany Rose, Robert Boyd, Joanne Haddad, Donna Pettey, Wendy Muckle and Mark Tyndall

    Research Involvement and Engagement 2016 2:20

    Published on: 21 May 2016

  15. Research article

    Patient and public involvement in patient safety research: a workshop to review patient information, minimise psychological risk and inform research

    Patient safety is a growing research area. However, although patients and the public are increasingly involved in clinical research, there is little guidance on how best to involve patients in patient safety r...

    Dominic Furniss, Ioanna Iacovides, Imogen Lyons, Ann Blandford and Bryony Dean Franklin

    Research Involvement and Engagement 2016 2:19

    Published on: 17 May 2016

  16. Research article

    Patient involvement in a qualitative meta-synthesis: lessons learnt

    Patients and researchers must work together to improve the relevance and quality of research. Qualitative systematic reviews synthesise findings from a range of published qualitative studies to identify common...

    Kerin Bayliss, Bella Starling, Karim Raza, Eva C. Johansson, Codruta Zabalan, Susan Moore, Diana Skingle, Tiina Jasinski, Susan Thomas and Rebecca Stack

    Research Involvement and Engagement 2016 2:18

    Published on: 12 May 2016

  17. Research article

    Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers

    In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical...

    Anne McKenzie, Kirsten Alpers, Jane Heyworth, Cindy Phuong and Bec Hanley

    Research Involvement and Engagement 2016 2:16

    Published on: 9 May 2016

  18. Research article

    A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress

    Funders of research are increasingly requiring researchers to involve patients and the public in their research. Patient and public involvement (PPI) in research can potentially help researchers make sure that...

    Heather J. Bagley, Hannah Short, Nicola L. Harman, Helen R. Hickey, Carrol L. Gamble, Kerry Woolfall, Bridget Young and Paula R. Williamson

    Research Involvement and Engagement 2016 2:15

    Published on: 27 April 2016

  19. Research article

    Prioritising target behaviours for research in diabetes: Using the nominal group technique to achieve consensus from key stakeholders

    The behaviour of people with diabetes (e.g. taking medication) and the behaviour of doctors and other healthcare professionals (e.g. checking patients’ blood sugar) are important. Our research group wanted to ...

    Jennifer Mc Sharry, Milou Fredrix, Lisa Hynes and Molly Byrne

    Research Involvement and Engagement 2016 2:14

    Published on: 6 April 2016

  20. Research article

    Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership

    The James Lind Alliance (JLA) brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise shared uncertainties about the effects of treatment. The JLA eme...

    Mary Madden and Richard Morley

    Research Involvement and Engagement 2016 2:12

    Published on: 2 April 2016

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