Patients’ roles and rights in research

@article{Wicks2018PatientsRA,
  title={Patients’ roles and rights in research},
  author={Paul Wicks and Tessa Richards and Simon Denegri and Fiona Godlee},
  journal={British Medical Journal},
  year={2018},
  volume={362}
}
Full partnership with patients is essential to any modern research enterprise 
Better together: patient partnership in medical journals
TLDR
The BMJ’s experience can be a springboard for others to follow in the footsteps of those who have gone before them.
Evaluating patient and public involvement in research
TLDR
If the authors are serious about involvement, the international community needs to be equally serious about evaluation.
Patients’ roles in research: where is Africa?
Patients’ roles and rights in research are vital.1 In Africa, the challenges are greater than in other parts of the world owing to the large educational and societal gap between researchers and
Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot
  • T. Greenhalgh, L. Hinton, A. Chant
  • Medicine
    Health expectations : an international journal of public participation in health care and health policy
  • 2019
Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous.
The role of patients and carers in diffusing a health‐care innovation: A case study of “My Medication Passport”
  • S. Barber, Catherine French, J. Reed
  • Medicine, Political Science
    Health expectations : an international journal of public participation in health care and health policy
  • 2019
Patients are increasingly recognized as playing important roles in improving health services. Little is known about the mechanisms by which patients develop and diffuse local innovations in a complex
Involving underserved patient populations in research
TLDR
It is argued that patient involvement in research is essential and migrant patients are explicitly excluded from scientific research because they do not speak the language.
Patient friendly access to information is key.
Wicks and colleagues provide convincing evidence and arguments that patients want to be equal partners in health, regarding their own situation and getting better results from clinical research.1
Patients in research: one step in a long path
  • S. Lear
  • Medicine
    British Medical Journal
  • 2018
The BMJ encourages the engagement of patients in the design and conduct of research. As Wicks and colleagues say, funding agencies often include patients on grant review committees.1 These patients,
Partnering with patients in the production of evidence
TLDR
Some of the perceived challenges within patient and researcher partnerships in the production and implementation of evidence are described and areas where future EBMLive conferences will explore are highlighted.
...
1
2
3
4
5
...

References

SHOWING 1-10 OF 20 REFERENCES
Clarifying the roles of patients in research
TLDR
Common misunderstandings are a barrier to real progress and need to be addressed.
Evidence based medicine manifesto for better healthcare
TLDR
A response to systematic bias, wastage, error, and fraud in research underpinning patient care and its implications for clinical practice.
Patient and Public Involvement in Research
Nursing and Healthcare Research at a Glance is perfect for nursing and healthcare students, as well as newly qualified practitioners and anyone looking for a refresher or introduction to research.
Defining patient centricity with patients for patients and caregivers: a collaborative endeavour
TLDR
The development of a consistent definition of patient centricity and its associated principles provides an opportunity for biopharmaceutical companies to adopt and use these as a reference point for consistent patient engagement throughout the product life cycle.
Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context
TLDR
This commentary examines the prospects for a more critical approach to PPI which addresses context, is evidence-informed and mindful of persistent inequalities in health outcomes, at a time when models of PPI in NHS health research tend to be conceptually vague.
Establishing Return-on-Investment Expectations for Patient-Centric Initiatives
  • K. Getz
  • Medicine
    Therapeutic innovation & regulatory science
  • 2015
TLDR
Insight and suggestions are offered for organizations looking to establish ROI expectation and evaluation of their patient-centric initiatives.
Why we revolt: a patient revolution for careful and kind care by Victor Montori
TLDR
Why the authors revolt: A patient revolution for careful and kind care represents an impressive coming together of a lot of Montori’s work to date and his vision for the future of clinical medicine.
Empowered citizen ‘health hackers’ who are not waiting
TLDR
A group of citizen ‘Health Hackers’, who are building their own medical systems to help them overcome the unmet needs of their conditions, is emerging, with innovative use of current medical devices hacked to access data and Open-Source code producing solutions.
Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study
TLDR
Infrequent reporting of PPI activity increased after the introduction of The BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality.
Improving Protocol Design Feasibility to Drive Drug Development Economics and Performance
  • K. Getz
  • Business
    International journal of environmental research and public health
  • 2014
TLDR
The results of two major Tufts Center for the Study of Drug Development studies are reviewed quantifying the direct cost of conducting less essential and unnecessary protocol procedures and of implementing amendments to protocol designs.
...
1
2
...