Inverting the patient involvement paradigm: defining patient led research.

Research Involvement and Engagement
Laura B MaderThomas F Hiemstra

Abstract

Patients usually understand their disease and lifestyle needs better than many medical professionals. They also have important ideas about what research would be most beneficial to their lives, especially on how to manage symptoms in a way that improves daily quality of life. In the UK, the National Institute for Health Research has recognised the value of patient insight, and now requires researchers with public funding to involve patients and the public throughout the research process. There are many opportunities for involvement, but these generally focus on improving study design to ensure the trial is acceptable to participants. Some programmes work towards setting research priorities as important to patients, public members, and medical experts, but due to the complexity and cost involved in running clinical trials, the majority of research originates with the pharmaceutical industry or academic institutions. There is a clear mismatch between research ideas that patients prioritise (quality of life), and those actually investigated (drug development).The Patient Led Research Hub (PLRH) is a new initiative hosted by the Cambridge Clinical Trials Unit. The PLRH supports research ideas as proposed by patient organisations, p...Continue Reading

References

Apr 19, 2012·JAMA : the Journal of the American Medical Association·UNKNOWN Methodology Committee of the Patient-Centered Outcomes Research Institute (PCORI)

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Citations

Oct 31, 2019·QJM : Monthly Journal of the Association of Physicians·R El-DamanawiT F Hiemstra
Apr 15, 2020·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Tharanya SeeralanAnna Levke Brütt
Jun 27, 2019·GigaScience·Bastian Greshake TzovarasMad Price Ball
May 28, 2020·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Richard BedlackTerri Heiman-Patterson
Aug 9, 2019·Therapeutic Innovation & Regulatory Science·Marianne Botoft HansenChristine Erikstrup Hallgreen
Jul 10, 2020·Health Research Policy and Systems·Shira GraysonJoon-Ho Yu
Nov 7, 2020·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Malcolm McNeillNora Fayed
Jul 7, 2021·The Journal of Bone and Joint Surgery. American Volume·Dean OwyangJustin P Cobb

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Clinical Trials Mentioned

NCT02933268

Software Mentioned

INVOLVE
PLRH

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