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• judith.dando

  by Judith, over 3 years ago

  From niche to necessity: genomics in routine care

  Case-study submitted by Phillips Ives Review PMO on behalf of Tracie Miles RGN, PhD, Associate Director of Nursing and Midwifery, NHS South West Genomic Medicine Service Alliance.

  The Genomics Education Program (GEP), in partnership with NHS England and NHS Improvement and the RCNi, have delivered a series of three introductory webinars exploring genomics, its growing use in healthcare and the opportunities it brings for nurses, midwives and health visitors. The webinars (which are being sourced from the GEP and will be shared with PIR team) are aimed at those with little to... Continue reading

  From niche to necessity: genomics in routine care

  Case-study submitted by Phillips Ives Review PMO on behalf of Tracie Miles RGN, PhD, Associate Director of Nursing and Midwifery, NHS South West Genomic Medicine Service Alliance.

  The Genomics Education Program (GEP), in partnership with NHS England and NHS Improvement and the RCNi, have delivered a series of three introductory webinars exploring genomics, its growing use in healthcare and the opportunities it brings for nurses, midwives and health visitors. The webinars (which are being sourced from the GEP and will be shared with PIR team) are aimed at those with little to no existing knowledge of genomics. They feature contributions from a wide variety of professionals in practice, including introductions by chief nursing officer for England Ruth May, chief midwifery officer for England Professor Jacqueline Dunkley-Bent and Health Education England chief nurse Mark Radford.

  Webinar 1: What is genomics? How will this change my clinical practice?

  Webinar 2: How is genomics changing healthcare right now and in the future?

  Webinar 3: Genomics: It’s my time to learn!

  https://www.genomicseducation.hee.nhs.uk/nursing-educators-toolkit/adult-nursing-mainstreaming-genomics/

• Point of Care Pharmacogenetics in Routine Clinical Practice

  by John_McDermott, over 3 years ago

  Introduction: Medicines are the most common therapeutic intervention in healthcare, yet their effectiveness and safety show considerable inter-personal variation. There are many reasons for this, but there is an increasing awareness that response to medicine is affected by an individual’s genetic variation, a concept known as pharmacogenetics. Access to pharmacogenetic data at the point of prescribing could lead to improved medicines selection, leading to improved outcomes and better use of scarce healthcare resources. This is particularly true in the acute setting, where results would be required in a rapid timeframe to inform management.

  Over the next 3-5 years it is... Continue reading

  Introduction: Medicines are the most common therapeutic intervention in healthcare, yet their effectiveness and safety show considerable inter-personal variation. There are many reasons for this, but there is an increasing awareness that response to medicine is affected by an individual’s genetic variation, a concept known as pharmacogenetics. Access to pharmacogenetic data at the point of prescribing could lead to improved medicines selection, leading to improved outcomes and better use of scarce healthcare resources. This is particularly true in the acute setting, where results would be required in a rapid timeframe to inform management.

  Over the next 3-5 years it is increasingly likely that novel genomic point of care tests (POCTs) will become part of routine practice in some healthcare settings. These technologies have the potential to test for genetic changes in a clinically relevant timeframe. Nursing and midwifery colleagues are the professionals best placed to operate these systems, as the ambition is that they will become analogous to venous blood gases (VBGs) or blood sugar readings. Although this may sound ambitious, this has already been trialled successfully by nurses in the Neonatal Intensive Care Unit (NICU).

  Exemplar: Aminoglycosides are commonly prescribed antibiotics used for the treatment of neonatal sepsis. The MT-RNR1 m.1555A>G variant predisposes to profound aminoglycoside-induced ototoxicity (AIO), present in 1 in 500 babies. Current genotyping approaches take several days, which is unacceptable in acute settings. The Pharmacogenetics to Avoid the Loss of Hearing (PALOH) project set out to develop a rapid POCT for the m.1555A>G variant before implementation of this technology in the acute neonatal setting to guide antibiotic prescribing and avoid AIO. This pragmatic prospective implementation trial recruited neonates admitted to 2 large neonatal intensive care units between January 6, 2020, and November 30, 2020, in the UK. Neonates were tested for the m.1555A>G variant via the rapid POCT on admission to the neonatal intensive care unit. The babies were tested 24 hours a day, 7 days a week by neonatal intensive care nurses, all of whom had undergone a brief (20 minute) training session prior to the study.

  A total of 751 neonates were recruited across the study The MT-RNR1 POCT was able to genotype the m.1555A>G variant in 26 minutes. Three participants with the m.1555A>G variant were identified, all of whom avoided aminoglycoside antibiotics. Overall, 424 infants (80.6%) receiving antibiotics were successfully tested for the variant, and the mean time to antibiotics was equivalent to previous practice. No babies were missed due to the unavailability of nursing staff or lack of training. This rapid genetic POCT was integrated without disrupting normal clinical practice, and genotype was used to guide antibiotic prescription and avoid AIO. This approach identified the m.1555A>G variant in a practice-changing time frame, and wide adoption could significantly reduce the burden of AIO.

  Recommendation: This represents just one example of a genetic change which could be used to tailor management in the acute setting. Nursing colleagues were essential to the delivery of this project and they will play a key role if similar technologies are to be implemented in other practice settings. Tailored, practice specific, education is required for nurses and midwives so they are aware of how genetics (and specifically pharmacogenetics) can be used to guide management of their patients. Support should be provided around how to discuss these new types of tests with their patients, especially in the acute setting where traditional consenting models might not be appropriate.

• Digital Diabetes from a Patient Perspective

  by Beth, over 3 years ago

  My personal experience of wearable technology began when I was 10 years old, as a Type 1diabetic from the age of 10 weeks, I was provided with my first Insulin Pump tomanage my diabetes in 2007.

  In 2019 I then transferred to my first Continuous Glucose Monitor (Freestyle Libre) and I am now on the Medtronic CGM which uses Bluetooth to interact with the compatible insulin pump to adjust my insulin according to my blood glucose levels. The blood glucose results are also mirrored in a smartphone app, enabling the user to view their results on their phone, rather than... Continue reading

  My personal experience of wearable technology began when I was 10 years old, as a Type 1diabetic from the age of 10 weeks, I was provided with my first Insulin Pump tomanage my diabetes in 2007.

  In 2019 I then transferred to my first Continuous Glucose Monitor (Freestyle Libre) and I am now on the Medtronic CGM which uses Bluetooth to interact with the compatible insulin pump to adjust my insulin according to my blood glucose levels. The blood glucose results are also mirrored in a smartphone app, enabling the user to view their results on their phone, rather than having to access their insulin pump.

  Diabetes technology has rapidly developed over the past 15 years from when I first had an insulin pump. From a patient perspective, the technology has empowered me to take more control of my diabetes; to use the results presented to me to make changes to my insulin regimes. Being able to access my blood glucose levels without using a conventional finger prick test provides minute-by-minute data which was previously impossible. This can be initially overwhelming to the user, it could cause anxiety if the patient's blood sugar levels are out of range-particularly with the latest Medtronic device that I am using, as the patient has little control and the pump generally does all the decision making using algorithms.

  However, in time, I have learned that the algorithms are incredibly intuitive, and having to trust the device is crucial. Once I had learned to allow the technology to perform as designed, I now have so much more freedom, as a huge responsibility for my diabetes control is taken care of.

  The educational element of being on an insulin pump and CGM has been faultless, with diabetes nurses working alongside manufacturer reps to deliver detailed training with each new product, allowing the user to feel confident and competent in using the device independently. The lines of communication in case of malfunction or damage to the device has also been impeccable.

  However, the communication between specialist and community teams is an area for improvement. With my GP not being aware of my switch to a new CGM being a potential issue. Furthermore, although my Diabetes team has the same access to my blood glucose and insulin doses as I do as the patient, my GP and other community care teams do not. The technology enables care teams to view your data in real time, but only my diabetes team has access to this information via the compatible software.

  To better my care would be if primary care teams could have access to this data, to limit venepuncture appointments to measure HbA1C, when the software can estimate this based on my Continuous Glucose Monitoring.

  In the future, the same ethos should be applied to secondary care, as if a diabetic patient is admitted to hospital for reasons unrelated to their diabetes, I would argue that they should still have the same autonomy for their diabetes control if they were at home, and that clinicians in inpatient areas could have live access to their blood glucose, should they choose to view it. There are clearly consent issues for data sharing, so that the patient would have to authorise this access to data. However, I believe that this would lead to improved patient outcomes and an improved hospital experience for diabetic patients, who have had good glucose control in the community, and will understand their diabetes management completely. Understandably, mitigations would be in place if a patient became acutely unwell or could no longer manage their condition for a plethora of reasons, but up until that point, I passionately believe that the technology that is available to patients in their own homes, should have a seamless transition into the healthcare setting.

  As a Digital Nurse, I can see the possibilities for how tech can improve healthcare and as a patient I am excited to see those possibilities become realities.

• Welsh Nursing Review and discussion

  by Fran Beadle , over 3 years ago

  What is working well –

  
  

  office 365 and Microsoft teams has been a game changer in terms of working on shared documents BUT it is limited by our familiarity with the system and the outdated/ slow systems we are using to access it.. there are multiple servers across multiple sites and they have all moved over to office 365 at different times..

  
  

  For more junior staff, office 365 and teams has been great for accessing training from home and enabling them to attend meetings but they are limited by their access to suitable IT equipment at home and in our... Continue reading

  What is working well –

  
  

  office 365 and Microsoft teams has been a game changer in terms of working on shared documents BUT it is limited by our familiarity with the system and the outdated/ slow systems we are using to access it.. there are multiple servers across multiple sites and they have all moved over to office 365 at different times..

  
  

  For more junior staff, office 365 and teams has been great for accessing training from home and enabling them to attend meetings but they are limited by their access to suitable IT equipment at home and in our rural area the poor/ slow broadband

  
  

  What needs to change

  
  

  ESR – this system is not flexible enough to record and collate the specific paediatric training that our staff require and finding any records of learning is time consuming and frustrating as the system logs you out of the business intelligence section after a short space of time. – we have to keep physical records in paper or in shared excel documents. These require frequent updating as new education/ training/ clinical skills are updated or changed

  
  

  We need staff to have access to a user friendly digital learning management system so that they can see at a glance what training they need to do. This system needs to have the flexibility built in so that line managers/practice development staff can check individual learning records and add/ remove/ update learning packages for specific groups of staff.. e.g. band 6 paeds HDU staff need different skills and updates to band 3-4 hospital play specialists

  
  

  Digital literacy and familiarity with the health board digital systems- all staff need some basic digital literacy skills – ideally using standardised and industry recognised competency framework.

  
  

  What should we think about for the future?

  
  

  Digitalising all patient records for all staff medical nursing and allied health professionals .

  Allowing access to these for patients – for young children, allowing access to these from the person/s who have parental responsibility and then as children reach the age where they are able to make independent medical decisions – for the medical records to be available to them alone. Permission to share these documents with a parent /carer/ next of kin will require consideration of safeguarding/ protection of vulnerable adult/domestic abuse etc protocols.

  
  

  Improving the standard of hardware used in NHS settings and ensuring that legacy systems are integrated with new digital systems – there is nothing worse than not being able to open/save/edit documents because the pc/laptop you are using is still using office 2016 or earlier

  
  

• Using point-of-care scanning to enable real time data capture and improve patient safety

  by GS1 UK, over 3 years ago

  This case study responds to the following points outlined above.

  • Data capture and use in nursing and midwifery practice: how is data used now and how should it be used in the future.
  • Changing the practice of nurses and midwives through use of data and technology and addressing barriers.
  • Enhancing person centred practice through use of data, information and technology.

  The full case study response is outlined below:
  
  Using point-of-care scanning to enable real time data capture and improve patient safety
  
  Background

  Nurses and midwives collect large volumes of data across various different touchpoints throughout a patient’s care journey. However... Continue reading

  This case study responds to the following points outlined above.

  • Data capture and use in nursing and midwifery practice: how is data used now and how should it be used in the future.
  • Changing the practice of nurses and midwives through use of data and technology and addressing barriers.
  • Enhancing person centred practice through use of data, information and technology.

  The full case study response is outlined below:
  
  Using point-of-care scanning to enable real time data capture and improve patient safety
  
  Background

  Nurses and midwives collect large volumes of data across various different touchpoints throughout a patient’s care journey. However this data is not always captured electronically, in real time at the point of care, or in a standardised format. This leaves processes vulnerable to error – whether that be due to manual data capture, or because data is obtained in different formats that cannot be easily shared between required departmental systems.
  
  The ability to capture and share information seamlessly is critical for any patient, but even more so in maternity to ensure the accurate and real-time capture of neonatal data. This can be managed efficiently using point-of-care-scanning technologies combined with the adoption of GS1 standards.
  
  GS1 standards are used to uniquely identify, capture, and share information for every person, every product, and every place, throughout a patient’s care journey. Plus, because the data is captured in a standardised format, this means it is both system and device agnostic rendering it interoperable. It is this interoperability that enables it to be shared seamlessly wherever it is needed. The Scan4Safety programme, introduced in 2016, centred on the use of point-of-care scanning technologies to capture this data in real time, directly at the point of care or use.
  
  Via the Scan4Safety programme six NHS trusts were selected by the Department of Health and Social Care (DHSC), to implement GS1 standards as a means to improve patient safety, reduce unwarranted clinical variation, and drive operational efficiencies.
  
  Results from the programme demonstrate the value of standardising data to enable interoperability and traceability.
  
  

  What is working well?
  
  Many trusts have started their Scan4Safety journey. Those that have, have been able to improve patient safety, release clinical staff time to care, and reduce inventory costs and wastage.
  
  Examples of case studies to support this can be found here:

  https://healthcare.gs1uk.org/cases/the-benefits-of-positive-patient-identification/

  https://healthcare.gs1uk.org/cases/carescan-enabling-safer-more-efficient-care/

  https://healthcare.gs1uk.org/cases/gs1-standards-and-the-patient-pathway/

  https://healthcare.gs1uk.org/cases/university-hospitals-of-derby-and-burton-nhs-foundation-trust-e-obs/

  https://healthcare.gs1uk.org/cases/harnessing-the-clinical-benefits-of-point-of-care-scanning/

  
  A national drive for Scan4Safety is currently being led by NHS England Transformation Directorate to encourage NHS trusts to adopt GS1 standards as part of their digital transformation projects.
  
  The full Scan4Safety evidence report can be found here: https://healthcare.gs1uk.org/scan4safety/.
  
  

  What needs to change?
  
  Greater awareness of Scan4Safety principles and benefits need to be communicated to all nurses and midwives, as it affects the whole patient pathway from admission to discharge.
  
  Use cases and benefits for nursing and midwifery staff include:

  • Accurate, positive patient identification (including for newborns) – to ensure the right patient is confirmed prior to any medical treatment
  • Accurate breast milk tracking (from mother to baby) – this ensures the newborn receives the right milk, reducing the risk of human error of mismatching mother and baby milk
  • Electronic observations – (see Derby’s e-observation case study link above)
  • Inventory management/stock control – great monitoring of product availability for procedures e.g. medical devices, consumables and surgical instruments
  • Asset management – improved traceability of equipment to ensure it can be located quickly and procedures are not delayed
  • Closed-loop medicines administration – an effective patient safety measure to ensure the right medication is administered via the correct route, and that it is in date and at the right dosage
  • Live bed state – real-time monitoring of bed available to help with resource and capacity planning
  • Patient tracking – beneficial for infection prevention and control by monitoring a patient’s care journey
    
    

  More information on use cases and Trust implementation can be found here: https://healthcare.gs1uk.org/cases.
  
  What should we think about for the future?
  
  The widespread adoption of data standards should be an inherent part of every health and care organisation. Scan4Safety and the adoption of GS1 standards provides clear evidence of the benefits that arise when standardised data and real-time data capture are used. All staff would need to have access to the appropriate point-of-care scanning tools, and appropriate knowledge and training, to make sure all staff are equipped to manage any transition period ahead of any changes to processes.
  
  For Scan4Safety to be truly impactful for the nursing and maternity workforce, scanning needs to become “the norm” – just as it is commonplace in retail at the point of sale. Scanning is simple, yet effective, and familiar task encountered on a daily basis.
  
  Scanning technology at the point of care provides real-time patient data and information that enables person centred practice. The information provided can determine better patient outcomes, reduce unwarranted clinical variation and improve patient safety.
  
  GS1 standards are used in every maternity ward within hospitals in England for blood spot cards used as part of the NHS Newborn Bloodspot Screening programme. This references the use of the GS1 GSRN (Global Service Relation Number), used to uniquely identify patients. Additional information can be found in section 3.1 of the guidelines here.
  
  Furthermore, around half of NHS acute trusts either already use, or have plans to use, Scan4Safety for wider use cases. What is really important is that whatever tracking system is used the data must be interoperable as well as system and device agnostic. This will ensure better data sharing and future-proofing against any future demands for data from NHS arm’s length bodies such as NHS England.
  
  With the right tools, education, and understanding of the principles and aims of Scan4Safety, scanning will address barriers to change and enhance person centred practice, encouraging uptake and active use.

• vivianjimenezocampo@gmail.com

  by VIVIAN JIMENEZ OCAMPO, over 3 years ago

  Aprendizaje basado en retos: una experiencia de innovación para resolver problemas en Enfermedades Raras

  Vivian Fernanda Jiménez Ocampo/ Enfermera, Máster en Enfermedades Raras, PhD. Profesor, Facultad de Enfermería y Rehabilitación, Universidad de La Sabana. vivianjo@unisabana.edu.co

  
  

  Las enfermedades raras (ER) son condiciones de salud complicadas que son difíciles de manejar en múltiples niveles. Hay más de 6.000 enfermedades y aproximadamente el 80 por ciento de estas son genéticas y el 95 por ciento de ellas ni siquiera tiene un tratamiento aprobado. La escasez de datos disponibles determina principalmente un escenario intrincado incluso para los médicos especialistas, lo que a su vez... Continue reading

  Aprendizaje basado en retos: una experiencia de innovación para resolver problemas en Enfermedades Raras

  Vivian Fernanda Jiménez Ocampo/ Enfermera, Máster en Enfermedades Raras, PhD. Profesor, Facultad de Enfermería y Rehabilitación, Universidad de La Sabana. vivianjo@unisabana.edu.co

  
  

  Las enfermedades raras (ER) son condiciones de salud complicadas que son difíciles de manejar en múltiples niveles. Hay más de 6.000 enfermedades y aproximadamente el 80 por ciento de estas son genéticas y el 95 por ciento de ellas ni siquiera tiene un tratamiento aprobado. La escasez de datos disponibles determina principalmente un escenario intrincado incluso para los médicos especialistas, lo que a su vez conduce a la llamada "odisea diagnóstica" para el paciente. Esta situación requiere de soluciones innovadoras que apoyen el proceso al que se enfrenta la persona con ER y su familia. Según el Observatorio del Instituto para el Futuro de la Educación Tecnológico de Monterrey (2021), el aprendizaje basado en desafíos es un ecosistema de aprendizaje que, además de desarrollar “habilidades del siglo XXI” como la comunicación, la organización, el trabajo en equipo, el pensamiento crítico, la creatividad, entre otros,

  Con este enfoque se ha desarrollado en la Facultad de Enfermería y Rehabilitación de la Universidad de La Sabana la asignatura de embriología y genética, asignatura que pertenece al plan de estudios de enfermería, pero es optativa para todos los estudiantes universitarios, lo que permite trabajar en la planificación. de soluciones innovadoras para solucionar los problemas que se presentan en la población con ER de forma interdisciplinar y colaborativa. Este curso aborda los conceptos básicos de la genética y los desafíos compartidos que enfrentan las personas con enfermedades raras, especialmente cuando acceden a la atención médica. Incluye información que el profesional de la salud promedio puede no conocer, con muchas historias, ejemplos, herramientas, sitios web, fuentes de conocimiento, imágenes de la comunidad de enfermedades raras,

  El establecimiento de un modelo de aprendizaje basado en retos y la inclusión de asignaturas orientadas al estudio y comprensión de las enfermedades raras, sin duda constituye un valioso recurso para la gestión del conocimiento desde las instancias más primarias de formación profesional, gestionando el conocimiento, acercándose a las necesidades de la persona. que padecen la enfermedad, su familia y la sociedad que les rodea.

  1 comment

• The role of a neurogenetics clinical nurse specialist in transforming neuroscience nursing by embedding genomics in clinical practice

  by Mark Mencias, over 3 years ago

  Background:

  Neurogenetic conditions, although individually rare, are common in certain subgroups in neurosciences such as, but not limited to the following: neuromuscular disorders, young-onset movement disorder, and mitochondrial disorders. CNS' and APNs in neurosciences are perfectly positioned to offer genomics and therefore embedding it in the nurses' clinical practice is imperative to deliver modern, evidence-based and holistic nursing care. However, neurosciences CNS' and APNs in UK may not necessarily have the appropriate knowledge, skills or competence to facilitate genomics conversation, genomics testing, return of genomic test results, and genomic counselling. Therefore, a neurogenetics clinical nurse specialist was created to embed... Continue reading

  Background:

  Neurogenetic conditions, although individually rare, are common in certain subgroups in neurosciences such as, but not limited to the following: neuromuscular disorders, young-onset movement disorder, and mitochondrial disorders. CNS' and APNs in neurosciences are perfectly positioned to offer genomics and therefore embedding it in the nurses' clinical practice is imperative to deliver modern, evidence-based and holistic nursing care. However, neurosciences CNS' and APNs in UK may not necessarily have the appropriate knowledge, skills or competence to facilitate genomics conversation, genomics testing, return of genomic test results, and genomic counselling. Therefore, a neurogenetics clinical nurse specialist was created to embed and promote genomics in neurosciences nursing practice.

  The neurogenetics CNS facilitates the nurse-led neurogenetics clinic with a primary objective of providing equitable access to genomic services to patients with rare neurogenetic conditions. The neurogenetics CNS is involved in the following: (1) facilitate genomic conversations and testing to confirm/support clinical diagnosis; (2) counselling pre and post genomic test; (3) referral to clinical genetics team for predictive/cascade testing of at-risk family members; (4) referral to local health and social care services i.e. community physiotherapist, mental health teams; (5) signposting to support groups (6) genomic education of clinical and non-clinical staff; (7) academic and clinical research.

  Recommendation:

  Nurses are perfectly positioned to; facilitate genomics conversation; provide counselling to help/support the patient to better understand the genomic test and the results (if available) as well as its implications to themselves and their family; treatment options (if available); active monitoring and symptom management; access to local health and social care services; and advanced care planning. Therefore, upskilling all nurses (and midwives) in basic genomics is timely and necessary to deliver a modern, evidence-based, and holistic nursing care. This could be achieved by providing educational opportunities to nurses and midwives (including students) to learn more about the role of genomics in healthcare such as emerging technologies used in delivering genomics nursing/midwifery services. In the future, nurses will be at the forefront of delivering advanced healthcare services. Genomics nursing and midwifery is key in achieving this future goal.