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  1. Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not research...

    Authors: Sally Crowe, Eleanor Barker, Meg Roberts, Lucy Lloyd, Clara M. de Barros, Ben Rebelo-Harris, Catherine Meads and Catherine L. Saunders
    Citation: Research Involvement and Engagement 2021 7:64
  2. Core outcome sets (COS) are lists of consensus-determined outcomes to be measured and reported in all clinical research studies within a disease area. While including patients and families in COS development t...

    Authors: Shelley M. Vanderhout, Maureen Smith, Nicole Pallone, Kylie Tingley, Michael Pugliese, Pranesh Chakraborty, Sylvia Stockler, Martin Offringa, Nancy Butcher, Stuart G. Nicholls and Beth K. Potter
    Citation: Research Involvement and Engagement 2021 7:66
  3. There is an apparent reluctance to engage ‘vulnerable’ participants in conversation about sensitive topics such as suicide and violence and this can often lead to a paucity of research in these areas. This stu...

    Authors: Laura Hemming, Daniel Pratt, Gillian Haddock, Peer Bhatti and Jennifer Shaw
    Citation: Research Involvement and Engagement 2021 7:65
  4. Involving patients and their carers in research has become more common, as funders demand evidence of involvement. The ‘Patient Voice in Cancer Research’ (PVCR) is an initiative led by University College Dubli...

    Authors: Éidín Ní Shé, Aoife Gordan, Barbara Hughes, Tom Hope, Teresa McNally, Ramon Whelan, Mary Staunton, Margaret Grayson, Liane Hazell, Iseult Wilson, Richard Stephens, Elaine Quinn and Amanda McCann
    Citation: Research Involvement and Engagement 2021 7:63
  5. This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to ...

    Authors: Soren Eik Skovlund, Lise H. Troelsen, Lotte Klim, Poul Erik Jakobsen and Niels Ejskjaer
    Citation: Research Involvement and Engagement 2021 7:62
  6. Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. ...

    Authors: Mareike Dreier, Johanna Baumgardt, Thomas Bock, Martin Härter and Sarah Liebherz
    Citation: Research Involvement and Engagement 2021 7:60
  7. Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse ...

    Authors: N. S. Goedhart, C. A. C. M. Pittens, S. Tončinić, T. Zuiderent-Jerak, C. Dedding and J. E. W. Broerse
    Citation: Research Involvement and Engagement 2021 7:59
  8. A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is...

    Authors: Elly Park, Mary Forhan and C. Allyson Jones
    Citation: Research Involvement and Engagement 2021 7:58
  9. The effective impact of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical ...

    Authors: David Feldman, Paola Kruger, Laure Delbecque, Ashley Duenas, Oana Bernard-Poenaru, Séverine Wollenschneider, Nick Hicks, Janine Ann Reed, Ify Sargeant, Chi Pakarinen and Anne-Marie Hamoir
    Citation: Research Involvement and Engagement 2021 7:57
  10. The impact of child health research can be far reaching; affecting children’s immediate health, their adult health, the health of future generations and the economic wellbeing of countries. Consumer and commun...

    Authors: Fenella J. Gill, Catherine Pienaar and Tanya Jones
    Citation: Research Involvement and Engagement 2021 7:56
  11. Collaborating with end-users to develop interventions tailored to fit unique circumstances is proposed as a way to improve relevance and effectiveness of an intervention. This study used a local needs driven a...

    Authors: Millicent Addai Boateng, Eter Agyei-Baffour, Sanne Angel, Ofeibea Asare, Benjamin Prempeh and Ulrika Enemark
    Citation: Research Involvement and Engagement 2021 7:55
  12. The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research ...

    Authors: Sara S. Masoud, Ashlie A. Glassner, Neela Patel, Mayra Mendoza, Deborah James, Sheran Rivette and Carole L. White
    Citation: Research Involvement and Engagement 2021 7:54
  13. Increasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented. Critiques of PPI bein...

    Authors: Joanna Reynolds, Margaret Ogden and Ruth Beresford
    Citation: Research Involvement and Engagement 2021 7:53
  14. Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. Ther...

    Authors: Julia Jones, Marion Cowe, Sue Marks, Tony McAllister, Alex Mendoza, Carole Ponniah, Helena Wythe and Elspeth Mathie
    Citation: Research Involvement and Engagement 2021 7:52
  15. Photovoice is a method used to help engage community members to understand local realities and promote social change. Photovoice uses cameras in the hands of participants as a tool to visually document a speci...

    Authors: Tara B. Mtuy, Jeremiah Mepukori, Joseph Lankoi and Shelley Lees
    Citation: Research Involvement and Engagement 2021 7:51
  16. Involving patients and communities with health research in low- and middle-income countries (LMICs) contributes to increasing the likelihood that research is relevant in local context and caters to the needs o...

    Authors: Karolin Kroese, Bernard Appiah Ofori, Darling Ramatu Abdulai, Mark Monahan, Angela Prah and Stephen Tabiri
    Citation: Research Involvement and Engagement 2021 7:50
  17. Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, careg...

    Authors: Pooja Saini, Shaima M. Hassan, Esmaeil Khedmati Morasae, Mark Goodall, Clarissa Giebel, Saiqa Ahmed, Anna Pearson, Lesley M. Harper, Jane Cloke, Jenny Irvine and Mark Gabbay
    Citation: Research Involvement and Engagement 2021 7:49
  18. Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a...

    Authors: Renske Visser, Alyce-Ellen Barber, Anthony X, Sue Wheatcroft, Philip Mullen and Jo Armes
    Citation: Research Involvement and Engagement 2021 7:48
  19. Engaging parents in child health research can facilitate choosing relevant research questions, recruiting participants who reflect the diversity of large communities, and disseminating study results to communi...

    Authors: Shelley M. Vanderhout, Catherine S. Birken, Maria Zaccaria Cho and Jonathon L. Maguire
    Citation: Research Involvement and Engagement 2021 7:47
  20. Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has th...

    Authors: Safina Islam, Olivia Joseph, Atiha Chaudry, Davine Forde, Annie Keane, Cassie Wilson, Nasima Begum, Suzanne Parsons, Tracy Grey, Leah Holmes and Bella Starling
    Citation: Research Involvement and Engagement 2021 7:46
  21. The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved i...

    Authors: Marjolein van Rooijen, Anneke van Dijk-de Vries, Stephanie Lenzen, Ruth Dalemans, Albine Moser and Anna Beurskens
    Citation: Research Involvement and Engagement 2021 7:45
  22. The objectives are to: 1) describe engagement processes used to prioritize and address regional comprehensive cancer control needs among a Community-Academic Advisory Board (CAB) in the medically-underserved, ...

    Authors: Jamie M. Zoellner, Kathleen J. Porter, Donna-Jean P. Brock, Emma Mc Kim Mitchell, Howard Chapman Jr, Deborah Clarkston, Wendy Cohn, Lindsay Hauser, Dianne W. Morris, Sarah Y. Ramey, Brenna Robinson, Scott Schriefer, Noelle Voges and Kara P. Wiseman
    Citation: Research Involvement and Engagement 2021 7:44
  23. This paper presents a user involvement process, called needs-led research, conducted as a part of a doctoral degree project aiming to explore research priorities and, ultimately, to develop a final top 10 list...

    Authors: Ruth-Ellen Slåtsveen, Torunn Wibe, Liv Halvorsrud and Anne Lund
    Citation: Research Involvement and Engagement 2021 7:43
  24. Clinical Trials Units are encouraged to integrate Patient and Public Involvement (PPI) into all aspects of trial design, running and oversight. This research explored the induction and training of PPI Contribu...

    Authors: Emily C. Pickering, Bec Hanley, Philip Bell, Jacqui Gath, Patrick Hanlon, Robert Oldroyd, Richard Stephens and Conor D. Tweed
    Citation: Research Involvement and Engagement 2021 7:42
  25. England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health da...

    Authors: C. Atkin, B. Crosby, K. Dunn, G. Price, E. Marston, C. Crawford, M. O’Hara, C. Morgan, M. Levermore, S. Gallier, S. Modhwadia, J. Attwood, S. Perks, A. K. Denniston, G. Gkoutos, R. Dormer…
    Citation: Research Involvement and Engagement 2021 7:40
  26. Access to, and awareness of, appropriate authorship criteria is an important right for patient partners. Our objective was to measure medical journal Editors-in-Chief’ perceptions of including patients as (co-...

    Authors: Kelly D. Cobey, Zarah Monfaredi, Evelyn Poole, Laurie Proulx, Dean Fergusson and David Moher
    Citation: Research Involvement and Engagement 2021 7:39
  27. In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners fo...

    Authors: Lisa Hartling, Sarah A. Elliott, Kelli Buckreus, Julie Leung and Shannon D. Scott
    Citation: Research Involvement and Engagement 2021 7:38
  28. Guidelines for patient decision aids (DA) recommend target population involvement throughout the development process, but developers may struggle because of limited resources. We sought to develop a feasible m...

    Authors: Kevin Selby, Regula Cardinaux, Beatrice Metry, Simone de Rougemont, Janine Chabloz, Verena Meier-Herrmann, Jürg Stoller, Marie-Anne Durand and Reto Auer
    Citation: Research Involvement and Engagement 2021 7:37
  29. During care transitions, the older (75+) patient’s agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving pa...

    Authors: Troels Kjærskov Hansen, Annesofie Lunde Jensen, Else Marie Damsgaard, Tone Maria Mørck Rubak, Mikkel Erik Juul Jensen and Merete Gregersen
    Citation: Research Involvement and Engagement 2021 7:36
  30. In July 2020 Cancer Research UK undertook a rapid review of the studies in its clinical research portfolio to assess the impact of the Covid-19 pandemic. The review examined over 160 research studies funded by...

    Authors: Anne Croudass and Richard Stephens
    Citation: Research Involvement and Engagement 2021 7:35
  31. Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (res...

    Authors: Sarah E. Knowles, Dawn Allen, Ailsa Donnelly, Jackie Flynn, Kay Gallacher, Annmarie Lewis, Grace McCorkle, Manoj Mistry, Pat Walkington and Jess Drinkwater
    Citation: Research Involvement and Engagement 2021 7:34
  32. A controlled human infection model (CHIM) involves deliberate exposure of volunteers to pathogens to assess their response to new therapies at an early stage of development. We show here how we used public inv...

    Authors: Vivak Parkash, Georgina Jones, Nina Martin, Morgan Steigmann, Elizabeth Greensted, Paul Kaye, Alison M. Layton and Charles J. Lacey
    Citation: Research Involvement and Engagement 2021 7:33
  33. Australian women from migrant and refugee communities experience reduced access to sexual and reproductive healthcare. Human-centred design can be a more ethical and effective approach to developing health sol...

    Authors: Rebeccah Bartlett, Jacqueline A. Boyle, Jessica Simons Smith, Nadia Khan, Tracy Robinson and Rohit Ramaswamy
    Citation: Research Involvement and Engagement 2021 7:32
  34. In line with Good Clinical Practice and the Declaration of Helsinki, it is the investigator’s responsibility to ensure that research participants are sufficiently informed, to enable the provision of informed ...

    Authors: Eleanor Coleman, Lydia O’Sullivan, Rachel Crowley, Moira Hanbidge, Seán Driver, Thilo Kroll, Aoife Kelly, Alistair Nichol, Orlaith McCarthy, Prasanth Sukumar and Peter Doran
    Citation: Research Involvement and Engagement 2021 7:31
  35. A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult publ...

    Authors: Laura Postma, Malou L. Luchtenberg, A. A. Eduard Verhagen and Els L. M. Maeckelberghe
    Citation: Research Involvement and Engagement 2021 7:30
  36. Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with...

    Authors: Perry R. Fleming, Makayla M. Swygert, Coen Hasenkamp, Jessica Sterling, Ginny Cartee, Rebecca Russ-Sellers, Melanie Cozad, Renee J. Chosed, William E. Roudebush and Ann Blair Kennedy
    Citation: Research Involvement and Engagement 2021 7:29
  37. Participatory approaches to developing health interventions with end-users are recommended to improve uptake and use. We aimed to explore the experiences of co-designing an online-delivered pain management pro...

    Authors: Hemakumar Devan, Meredith A. Perry, Mostafa Yaghoubi and Leigh Hale
    Citation: Research Involvement and Engagement 2021 7:28
  38. The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as...

    Authors: Colin Macarthur, Catharine M. Walsh, Francine Buchanan, Aliza Karoly, Linda Pires, Graham McCreath and Nicola L. Jones
    Citation: Research Involvement and Engagement 2021 7:27
  39. Citizen involvement is important for ensuring the relevance and quality of many research and innovation efforts. Literature shows that inadequate citizen involvement poses an obstacle during the research, deve...

    Authors: Anne Lund, Torhild Holthe, Liv Halvorsrud, Dag Karterud, Adele Flakke Johannessen, Hilde Margrethe Lovett, Erik Thorstensen, Flávia Dias Casagrande, Evi Zouganeli, Reidun Norvoll and Ellen Marie Forsberg
    Citation: Research Involvement and Engagement 2021 7:26
  40. Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibili...

    Authors: Tamara L. McCarron, Fiona Clement, Jananee Rasiah, Karen Moffat, Tracy Wasylak and Maria Jose Santana
    Citation: Research Involvement and Engagement 2021 7:25
  41. APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis to enable future differential diagnosis and treatment. During a 2-year clinical study images, bio...

    Authors: Jane Taylor, Sjouke Dekker, Diny Jurg, Jon Skandsen, Maureen Grossman, Anne-Karien Marijnissen, Christoph Ladel, Ali Mobasheri, Jon Larkin, Harrie Weinans and Irene Kanter-Schlifke
    Citation: Research Involvement and Engagement 2021 7:24

    The Correction to this article has been published in Research Involvement and Engagement 2022 8:15

  42. It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension observational cohort study (ASPREE-XT) would provide a platform for a future multigenerational research study (MGRS). ...

    Authors: Jack S. Nunn, Merrin Sulovski, Jane Tiller, Bruce Holloway, Darshini Ayton and Paul Lacaze
    Citation: Research Involvement and Engagement 2021 7:23
  43. The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and...

    Authors: Kathy Seddon, Jim Elliott, Miriam Johnson, Clare White, Max Watson, Annmarie Nelson and Simon Noble
    Citation: Research Involvement and Engagement 2021 7:22
  44. As patient-oriented research gains popularity in clinical research, the lack of patient input in foundational science grows more evident. Research has shown great utility in active partnerships between patient...

    Authors: Jenessa N. Johnston, Lisa Ridgway, Sarah Cary-Barnard, Josh Allen, Carla L. Sanchez-Lafuente, Brady Reive, Lisa E. Kalynchuk and Hector J. Caruncho
    Citation: Research Involvement and Engagement 2021 7:21
  45. The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out...

    Authors: Sarah Cecilie Tscherning, Hilary Louise Bekker, Tina Wang Vedelø, Jeanette Finderup and Lotte Ørneborg Rodkjær
    Citation: Research Involvement and Engagement 2021 7:20
  46. Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for comm...

    Authors: Hae-Ra Han, Ashley Xu, Kyra J. W. Mendez, Safiyyah Okoye, Joycelyn Cudjoe, Mona Bahouth, Melanie Reese, Lee Bone and Cheryl Dennison-Himmelfarb
    Citation: Research Involvement and Engagement 2021 7:19
  47. Collaborative working between academic institutions and those who provide health and social care has been identified as integral in order to produce acceptable, relevant, and timely research, and for outputs t...

    Authors: K. Wilkinson, J. Day, J. Thompson-Coon, V. Goodwin, K. Liabo, G. Coxon, G. Cox, C. Marriott and I. A. Lang
    Citation: Research Involvement and Engagement 2021 7:18
  48. Co-production has been widely recognised as a potential means to reduce the dissatisfaction of citizens, the inefficacy of service providers, and conflicts in relations between the former and the latter. Howev...

    Authors: Eleonora Gheduzzi, Cristina Masella, Niccolò Morelli and Guendalina Graffigna
    Citation: Research Involvement and Engagement 2021 7:16

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