Involving patients and the public in research

The Healthcare Improvement Studies Institute, July 2019

Healthcare Improvement Studies Institute learning report aims to build a better understanding of the role of patient and public involvement (PPI) in research, thereby helping ensure meaningful involvement that has tangible impacts and mitigate against undesired consequences.

Click here to view the full report.

Limbic-predominant age-related TDP-43 encephalopathy (LATE): consensus working group report

Brain, awz099, https://doi.org/10.1093/brain/awz099
This study describes a recently recognized disease entity, limbic-predominant age-related TDP-43 encephalopathy (LATE). LATE shares similar symptoms to Alzheimer’s disease, but it is a distinct disease linked to different brain proteins.  Interventions designed for Alzheimer’s disease will therefore be ineffective for LATE.  Developing an understanding of LATE will hopefully lead to new avenues of research into dementia treatments and care.
Click here to access the paper.

The contribution of cannabis use to variation in the incidence of psychotic disorder across Europe (EU-GEI): a multicentre case-control study

The Lancet Psychiatry, 19 March 2019
This large multicentre case-control study conducted across 11 sites in Europe and Brazil found that daily cannabis use was associated with increased odds of psychotic disorder compared with people who had never used cannabis, increasing to nearly five-times increased odds for daily use of high-potency types of cannabis.
Click here to access the full text paper.

Improving patient safety through collaboration: a rapid review of the academic health science networks’ patient safety collaboratives

The ASHN Network, March 2019
This report discusses the progress and impact made by England’s Patient Safety Collaboratives (PSCs) in their first four years. It was commissioned by The AHSN Network and written by The King’s Fund. The report notes how interest is shifting from supporting the improvement of individual services to improving how different services work together in local systems. It highlights the role the PSC programme has had in creating a movement for change and cultivating a shared vision among health and care organisations. It also suggests some areas PSCs and national NHS bodies could focus on to further support innovation, quality improvement and patient safety.
Click here to view the full report.

Involving NHS staff in research

Healthcare Improvement Studies Institute, February 2019
This report looks at the different ways NHS staff are getting involved in the research process including designing studies, collecting data, and disseminating and implementing research findings.  It also looks at how staff involvement in research could be improved and describes some of the barriers to active involvement, from lack funding and support through to a tendency for research opportunities to be offered to certain healthcare professions and specialties.
Click here to view the report.

Intellectual engagement and cognitive ability in later life (the “use it or lose it” conjecture): longitudinal, prospective study

BMJ 2018;363:k4925
This longitudinal, prospective, observational study aims to examine the association between intellectual engagement and cognitive ability in later life, and determine whether the maintenance of intellectual engagement will offset age related cognitive decline.  The study concludes that self reported engagement is not associated with the trajectory of cognitive decline in late life, but is associated with the acquisition of ability during the life course. Overall, findings suggest that high performing adults engage and those that engage more being protected from relative decline.
Click here to view the full paper.

Seven principles for public engagement in research and innovation policymaking: A guide from Nesta’s Inclusive Innovation team

Nesta, November 2018
Why should researchers, innovators and those whose jobs it is to regulate technology engage with people who aren’t like them on topics like research and innovation?

  • To give those in power a broader range of potential futures to aspire to
  • To encourage researchers and policymakers to think about broader social, political and ethical issues
  • To improve research and innovation
  • To make sure the benefits of research and innovation are shared widely

Proposes the following 7 key principles:

  • Supported by those with the power to change things
  • Open to experimentation
  • Designed with a clear goal in mind
  • Sensible about measures of success
  • Targeted at specific audiences and communities not the general public
  • Beneficial for participants
  • Informed and facilitated

Click here to view the full report.

Ensuring access to medicines: How to stimulate innovation to meet patients’ needs?: (Policy Brief 29)

European Observatory on Health Systems and Policies, November 2018
Brief that aims to inform discussions about stimulating more meaningful productivity in terms of pharmaceutical R&D. More specifically, it explores how R&D efforts can be steered to areas of unmet clinical needs and how efficiency in the R&D process can be increased. It also explicitly considers concrete options for strengthening cooperation between European Union member states in this context.
Click here to view the full report.