Patients and the Public
New and better treatments and health and social care services become available because people take part in research. More and more patients and service users participate in such research.
Now, members of the public are also getting involved in advising professionals about what research should be funded and helping to design and do research studies. Some members of the public become researchers themselves. This is Public Involvement in Research, sometimes called PCPIE (Patient Carer Public Involvement and Engagement) in research for short.
The term ‘public’ includes:
- potential patients,
- people who use health and social care services,
- people from organisations that represent people who use services.
Public involvement in research means that research is being done ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
What the public can do in health research includes, for example:
There is a national PCPIE initiative, the Patient Research Ambassador Initiative, that all CRNs, including ours, participate in and support. The purpose is to promote PCPIE in research across England and Wales. A Patient Research Ambassador (PRA) is someone who promotes health research from a patient point of view. They could be a patient, service user, carer or lay person who is enthusiastic about health research and willing to communicate that to other patients and public as well as healthcare professionals. For more information and to register your interest in becoming a PRA in the Yorkshire and Humber region, please contact email@example.com
Here at CRN Yorkshire and Humber we have a small team to help both the public and professionals understand, carry out and promote PCPIE in research. The team is:
- Maggie Peat, who is the CRN Y&H PCPIE Advisor with lengthy experience and interest in involving and engaging patients carers and the public in research. You can contact Maggie at firstname.lastname@example.org
- Srdjan Ljubojevic, who is CRN Y&H Research Delivery Manager, leading in cancer and mental health research and responsible forNetwork’s PCPIE engagement within the region. You can contact Srdjan at email@example.com
- Evie Chandler, who is the Patient Public and Carer Involvement and Engagement Officer in Y&H CRN. Evie promotes and supports PCPIE activities in the Y&H region and is the first point of contact for the team. You can contact Evie at firstname.lastname@example.org, or ring her at 01132060467 or on Twitter at @EviePPICRNyh
Ways in which we can help include:
- Resources to help both members of the public and researchers understand PCPIE and do it
- Advice about PCPIE in research
- Creating and supporting PCPIE networks in the region
- Support new PRAs until they find an organisation/area they wish to be involved in
What is a clinical trial?
Clinical trials are research studies involving patients, which compare a new or different type of treatment with the best treatment currently available (if there is one). Some clinical trials look at possible ways to prevent illnesses, for example by testing new vaccines.
How can I get involved?
Join Dementia Research
Dementia is one of the biggest challenges we face today. The number of people with Alzheimer's disease, vascular dementia and other types of dementia, is set to double over the next 30 years.
Research offers hope. It is only through research that we can understand what causes the disease, develop effective treatments, improve care and hopefully one day find a cure.
Join Dementia Research now
For queries relating to Join Dementia Research studies in the Yorkshire and Humber region, email email@example.com
Reble, P., Clauss, C., Riepen, M., Lankes, S., Bemmerl, T.: Connecting the Cloud: Transparent and Flexible Communication for a Cluster of Intel SCCs. In: Proceedings of the Many-core Applications Research Community (MARC) Symposium at RWTH, Aachen, Germany, RWTH Aachen University (November 2012)Google Scholar
Intel Corporation: SCC External Architecture Specification (EAS), Revision 1.1 (November 2010)Google Scholar
Mattson, T., van der Wijngaart, R.: RCCE: a Small Library for Many-Core Communication. Intel Corporation. Software 2.0-release (January 2011)Google Scholar
Lankes, S., Reble, P., Clauss, C., Sinnen, O.: Revisiting Shared Virtual Memory Systems for Non-Coherent Memory-Coupled Cores. In: Proceedings of the 2012 International Workshop on Programming Models and Applications for Multicores and Manycores (PMAM 2012) in Conjunction with the 17th ACM SIGPLAN Symposium on Principles and Practice of Parallel Programming (PPoPP 2012), New Orleans, LA, USA (February 2012)Google Scholar
Reble, P., Clauss, C., Lankes, S.: One-sided Communication and Synchronization for Non-Coherent Memory-Coupled Cores. In: Proceedings of the 2013 International Conference on High Performance Computing and Simulation (HPCS 2013), Helsinki, Finland (July 2013)Google Scholar
Reble, P., Lankes, S., Clauss, C., Bemmerl, T.: A Fast Inter-Kernel Communication and Synchronization Layer for MetalSVM. In: Proceedings of the 3rd MARC Symposium. KIT Scientific Publishing, Ettlingen (2011)Google Scholar
Reble, P., Lankes, S., Zeitz, F., Bemmerl, T.: Evaluation of Hardware Synchronization Support of the SCC Many-Core Processor (poster paper). In: 4th USENIX Workshop on Hot Topics in Parallelism (HotPar 2012), Berkeley, CA, USA (June 2012)Google Scholar
Gries, M., Hoffmann, U., Konow, M., Riepen, M.: SCC: A Flexible Architecture for Many-Core Platform Research. Computing in Science & Engineering 13(6), 79–83 (2011)CrossRefGoogle Scholar
Tsafrir, D., Etsion, Y., Feitelson, D.G., Kirkpatrick, S.: System Noise, OS Clock Ticks, and Fine-Grained Parallel Applications. In: Proceedings of the 19th Annual International Conference on Supercomputing, ICS 2005, pp. 303–312. ACM, New York (2005)Google Scholar
Morari, A., Gioiosa, R., Wisniewski, R., Cazorla, F., Valero, M.: A Quantitative Analysis of OS Noise. In: 2011 IEEE International Parallel Distributed Processing Symposium (IPDPS), pp. 852–863 (2011)Google Scholar
Intel Corporation: The SCC Programmer’s Guide, Revision 1.0 (January 2012)Google Scholar
Wassen, G., Lankes, S., Bemmerl, T.: Real-Time on Many-Core Systems – Where real-time and high-performance can benefit from each other (poster abstract). In: Proceedings of the Many-core Applications Research Community (MARC) Symposium at RWTH, Aachen, Germany, RWTH Aachen University (November 2012)Google Scholar
Wassen, G., Lankes, S., Bemmerl, T.: Harte Echtzeit für Anwendungsprozesse in Standard-Betriebssystemen auf Mehrkernprozessoren. In: Herausforderungen durch Echtzeitbetrieb - Echtzeit 2011, Boppard, Germany, pp. 39–48. Springer (2012)Google Scholar