Loading

logo

Current Research in Psychiatry

ISSN: 2768-3702

Commentary Open Access
Volume 1 | Issue 3 | DOI: https://doi.org/10.46439/Psychiatry.1.014

Active involvement of patient representatives in research: roles, tasks, and benefits in a pilot intervention study

A.P. Heijerman-Holtgrefe1,2,3, L.P. Beljaars1,3,4,5, C.W.J. Verdellen6,7, J. M. T. M. van de Griendt7, D. Cath8,9, P. J. Hoekstra10, C. Huyser1, E.M.W.J. Utens1,11,12,*
  • 1Levvel, Academic Centre for Child and Adolescent Psychiatry and Specialized Youth Care, Amsterdam, the Netherlands
  • 2Amsterdam UMC, University of Amsterdam, Department of Child and Adolescent Psychiatry, Amsterdam, the Netherlands
  • 3Dutch Tourette Association, Haarlem, the Netherlands
  • 4Parnassia Group, the Hague, the Netherlands
  • 5TicTalk & more, Veldhoven, the Netherlands
  • 6Parnassia Group/PsyQ, Nijmegen, The Netherlands
  • 7TicXperts, Heteren, The Netherlands
  • 8Department of Specialized Training, GGZ Drenthe, Assen, The Netherlands
  • 9University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
  • 10Department of Child and Adolescent Psychiatry, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
  • 11Research Institute of Child Development and Education, University of Amsterdam, Amsterdam, the Netherlands
  • 12Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC – Sophia Children’s Hospital, Rotterdam, The Netherlands
+ Affiliations - Affiliations

Corresponding Author

E.M.W.J. Utens, l.utens@levvel.nl

Received Date: May 04, 2021

Accepted Date: July 19, 2021

Citation:

Heijerman-Holtgrefe AP, Beljaars LP, Verdellen CWJ, van de Griendt JMTM, Cath D, Hoekstra PJ, et al. Active involvement of patient representatives in research: roles, tasks, and benefits in a pilot intervention study. Curr Res Psychiatry. 2021; 1(3):40-43.


Copyright: © 2021 Heijerman-Holtgrefe AP. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Abstract

Patient involvement in research and development has been increasingly applied and studied during the last decades. There is rising consensus that collaboration with patients or their representatives (e.g., parents, family members, partners) in co-developing new treatment interventions and participating in treatment studies is beneficial for patients, researchers, and society at large. In studying the feasibility of Tackle your Tics, an innovative treatment program for children with tic disorders, patient representatives played a unique role throughout the research process, performing multiple important tasks from start (co-designing the study, obtaining a grant, developing and leading workshops and parent meetings) to finish (interpretation of the data, providing feedback to the article, giving congress oral presentations). This commentary paper offers a brief research note providing tangible examples of the roles, tasks and benefits of patient representatives in research.  Active involvement of patient representatives in the Tackle your Tics pilot study has provided improvements in the treatment program with experience-based knowledge, and improvements in the research design, matching the needs and wishes of participating families. These benefits of involving patient representatives can be relevant for future research designs.

Keywords

Patient involvement, Patient perspective, Experience-based knowledge, Tourette syndrome, Tic disorders

Recommended Articles

Neodymium:YAG laser posterior capsulotomy in the lateral decubitus position

Here we report a novel method of performing a Neodyminium:YAG (Nd:YAG) laser posterior capsulotomy in an adult patient, unable to tolerate the procedure awake with topical anaesthesia in the outpatient clinic setting. The procedure was performed by altering the chin rest and arms of the Nd:YAG laser machine so that the procedure could be undertaken in an anaesthetized patient in the operating theatre, in the lateral decubitus position, with the laser machine upright in its normal position.

Presbyopia correcting IOLs and the ocular surface disease… The good, the bad and the ugly

The last two decades were especially fruitful for the refractive surgeons and for the industry who have been showing tremendous development in both understanding and meeting patients’ desire for spectacle independence. Ever since the first trials from Dr. Kenneth Hoffer with his early 1980’s effort in producing a multifocal IOL to the latest achievements from different companies in putting trifocals and EDOF optics to the market.

How many mutations does it take to make a uveal melanoma?

Uveal melanoma (UM) is a rare cancer that affects the choroid and, less frequently, the ciliary body or the iris (for recent reviews see [1-3]). Despite a profound knowledge of the oncogenic mechanisms behind UM tumorigenesis and despite an accurate cytogenetic and molecular prognosis, only limited advances have been made in UM therapy.

MSICS is a Simple Solution for a Big Problem

Manual small-incision cataract surgery (MSICS) is a sutureless cataract surgery that has multiple advantages over traditional phacoemulsification and extracapsular cataract extraction (ECCE) procedures. SICS became the procedure of choice for international ophthalmology, where the microscopes and operating room can be more challenging, in addition to the more advanced pathology often seen.

Surgical smoke and SARS-CoV-2 transmission

The protection of health care workers from nosocomial infection is a paramount consideration in the current pandemic involving severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Not only is prevention of viral transmission the most effective means to lessen the public health impact of coronavirus disease 2019 (COVID-19), but also both quarantine and illness – that disproportionately affect health care workers – have devastating effects on the ability of hospitals to adequately care for increased patient loads.

Full Text
Cite
Download PDF
Author Information X