Tag: medical database

Categories : Expert Opinion IT in HealthcareTags : Leave a comment

Datacentres Form Part of Healthcare Critical Systems – Carrying the Load and so Much More

On By ModernMedia
Photo by Christina Morillo

By Ben Selier, Vice President: Secure Power, Anglophone Africa at Schneider Electric

The adage, knowledge is king couldn’t be more applicable when it comes to the collection and utilisation of data.  And at the heart of this knowledge and resultant information lies the datacentre. Businesses and users count on datacentres, and more so in critical services such as healthcare.

Many hospitals today rely heavily on electronic health records (EHR), and this information resides and is backed up in on-premises datacentres or in the cloud. Datacentres are therefore a major contributor to effective and modernised healthcare.

There are several considerations when designing datacentres for healthcare. For one, hospitals operate within stringent legislation when it comes to the protection of patient information.  The National Health Act (No. 61 of 2003), for example, stipulates that information must not be given to others unless the patient consents or the healthcare practitioner can justify the disclosure.

Datacentres form part of critical systems

To add an extra layer of complexity, in South Africa, datacentres should feature built-in continuous uptime and energy backup due to the country’s unstable power supply.  Hospitals must therefore be designed to be autonomous from the grid, especially when they provide emergency and critical care.

Typically, datacentres are classified in tiers, with the Uptime Institute citing that a Tier-4 datacentre provides 99.995% availability, annual downtime of 0.4 hours, full redundancy, and power outage protection of 96 hours.

In healthcare and when one considers human lives, downtime is simply not an option. And whilst certain healthcare systems and its resultant availability are comparable to a typical Tier-3 or Tier-4 scenario, critical systems in hospitals carry a higher design consideration and must run 24/7 with immediate availability.

In healthcare, the critical infrastructure of a hospital enjoys priority.  What this means is the datacentre is there to protect the IT system which in turn ensures the smooth running of these critical systems and equipment.  There is therefore a delicate balance between the critical systems and infrastructure, and the datacentre, one can’t exist without the other.

Design considerations

To realise the above, hospitals must feature a strong mix of alternative energy resources such as backup generators, uninterrupted power supply (UPS) and renewables such as rooftop solar.

Additionally, like most organisations, storage volume and type and cloud systems will also vary from hospital to hospital. To this end, datacentre design for hospitals is anything but cookie cutter; teams need to work closely with the hospital whilst meeting industry standards for healthcare.

When designing healthcare facilities system infrastructure, the following should also be considered:

  • Software like Building Management Systems (BMS) are not just about building efficiency but also offer benefits such as monitoring and adjusting indoor conditions like temperature control, humidity, and air quality.

The BMS contributes to health and safety and critical operations in hospitals whilst also enabling patient comfort.

  • Maintenance – both building and systems maintenance transcend operational necessity and become a matter of life or death.
  • As mentioned, generators are essential when delivering continuous power which means enough fuel must be stored to run it. Here, hospitals must store fuel safely and in compliance with stringent regulations. In South Africa, proactively managing the refuelling timelines is also critical.  The response times of refuelling these (fuel) bunkers can be severely hindered by issues such as traffic congestion as a result of outages and lights now working.

Selecting the right equipment for hospitals is therefore a delicate balance between technological advancement and safety. For instance, while lithium batteries offer many benefits, when used in hospitals, it is paramount that it is also stored in dry, cool and safe location.

Here, implementing an extinguishing system is a must to alleviate any potential damage from fire or explosions.  That said, lithium batteries are generally considered safe to use but it’s important to be cognisant of its potential safety hazards.

Ultimately, hospitals carry the added weight of human lives which means the design of critical systems require meticulously planning and executed.

Categories : Diseases, Syndromes and Conditions Medical Research & TechnologyTags : Leave a comment

Sanofi’s Rare Disease Database Aids Healthcare Practitioners

On By ModernMedia
Image source: CDC/Unsplash

Sanofi’s rare disease database that helps healthcare practitioners tackle their unique challenges – and knowing that treatments are available directly improves patients’ wellbeing. This comprehensive database has also aided rare disease research.

Johannesburg, 28 February 2022: Patients with rare diseases present unique challenges to healthcare practitioners (HCPs). Obstacles to caring for them include diagnostic delays and a lack of information, expertise, and treatment options for many rare diseases. HCPs play a vital role in enhancing the quality of life for patients and families living with a rare disease by making appropriate referrals to specialists, helping to coordinate care, and assisting patients in obtaining the proper support.1,2

A disease is defined as ‘rare’ when it affects fewer than 1 in 2000 people.3

Over 7000 rare diseases have been described to date, affecting over 350 million people worldwide.3,4 While most (70-80%) of rare diseases are genetic and inherited, some may be acquired, and 70% are exclusively paediatric in onset.5

Recent surveys showed that those living with rare diseases had a significantly higher prevalence of anxiety and depression compared to the general population.5,6 Levels of high stress can become even worse for carers when the person they are supporting has a diagnosis with no available treatment option.5,6

Monique Nel, Medical Advisor – Rare Diseases at Sanofi says: “Sanofi has been dedicated to researching and developing innovative treatments for rare diseases for 40 years. Currently, Sanofi has one of the largest rare diseases pipelines in the industry, across multiple diseases and modalities.7”

“Our rare disease patient registries have grown to represent one of the largest collections of real-world data for rare diseases collected over the past 30 years. We have a presence in 68 countries worldwide, with more than 920 participating sites and more than 17 800 patients enrolled.”

These registries have helped researchers to publish studies describing the underlying biology of disease, identify risk factors impacting treatment outcomes, and share guidelines for monitoring and treatment.

A further useful resource for HCPs and patients is the list of rare diseases maintained by the Genetic and Rare Diseases Information Center (GARD) of the US National Institutes of Health.8          

Says Nel: “We understand the difficulty that healthcare professionals face when it comes to patient diagnosis of a rare disease, and that a coordinated approach to diagnosis and care for people living with rare diseases is needed. Rare diseases deserve the same amount of time, resources and dedication to finding effective treatments and therapies as any other conditions, which is a mission that Sanofi strives to promote every day, to help HCPs to improve diagnosis.”

References:

  1. Elliott E, Zurynski Y. Rare diseases are a ‘common’ problem for clinicians. Aust Fam Physician. 2015 Sep;44(9):630. http://www.ncbi.nlm.nih.gov/pubmed/26488039
  2. Dudding-Byth T. A powerful team: the family physician advocating for patients with a rare disease. Aust Fam Physician. 2015 Sep;44(9):634. http://www.ncbi.nlm.nih.gov/pubmed/264880401. NIH.
  3. Genetic and Rare Disease Information Center. FAQs About Rare Diseases. Available at: https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
  4. Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017 Dec 7;12(1):177. doi: 10.1186/s13023-017-0730-1. PMID: 29212508; PMCID: PMC5719717.
  5. Nguengang Wakap S, Lambert DM, Olry A, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet 2020;28:165–173. https://doi.org/10.1038/s41431-019-0508-0
  6. National Alliance for Caregiving. Rare Disease Caregiving in America. Available at: https://www.caregiving.org/wp-content/uploads/2020/05/NAC-RareDiseaseReport_February-2018_WEB.pdf
  7. Sanofi Your Health webpage. Rare Disease. https://www.sanofi.com/en/your-health/specialty-care/rare-diseases
  8. National Institutes of Health, Genetic and Rare Diseases Information Center. Caring for your patient with a rare disease.  Available at: https://rarediseases.info.nih.gov/guides/pages/122/caring-for-your-patient-with-a-rare-disease