Need to Strengthen Healthcare Research

 

The world today is confronted with a dangerous virus that has brought economies, travel and life to a complete standstill. Healthcare systems are trying their level best to keep afloat and discover a cure as soon as possible. This urgency to save lives has once again highlighted the need and importance of high-quality scientific evidence and knowledge, stable research infrastructure as well as funds available for medical research, to ensure better response and resilience.

Healthcare research also known as medical research is the driving force for improving the performance of healthcare systems and the quality of life of individuals by finding better preventive and proactive treatments and drugs. This can involve testing new medicines, vaccines, medical devices, new medical procedures as well as examining the whole genome sequence to find out the cause and treatments for various diseases.

While India today is well known for its excellent medical facilities and clinical expertise, it really lacks behind in the field of medical research. A study published by Ray et al (2016) revealed that between 2005-14 out of the 579 medical institutes and hospitals, that were evaluated, only 25 produced more than 100 papers in a year and alarmingly 57.3% of the medical colleges did not have a single publication in a decade as compared to the research output of Mayo clinic, which was approximately 3700 studies in a year. The reason for such a disappointing output can be insufficient funds, poor research infrastructure, the notion that research is done only for the benefit of the pharmaceutical industry as well as overburdened physicians having little time and energy left to think about any serious research.

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Apart from this the government and authorities have also failed to integrate medical education and research with basic sciences as well as technology as prevalent in the United States and most European countries. This proves to be a major roadblock to “Make in India” based innovations. In addition to this, there is also a strong presence of an authoritative and hierarchal set up that discourages capable start-ups and faculty to go beyond the routine healthcare practices particularly in the field of genetics.

Genomic research defined as the study of the whole genome to identify genetic mutations, the impact of these mutations on gene functions as well as the interaction of the genes with each other and with the environment in general has gained popularity over the last two decades. Researchers world over have analyzed enormous amounts of DNA sequenced data to assess genetic predisposition to diseases, to improve diagnostics and therapeutics for cancer, diabetes, neurological and cardiovascular issues and for the development of tests to improve the efficacy of drugs to prevent adverse drug reactions.

Even though genetic research and testing have the power to transform healthcare it is still grossly underutilized for disease management in India. Being home to different cultures and genetic diversity in addition to endogamous practices rare diseases such as blood disorders, primary immunodeficiency, neurodegenerative and musculoskeletal diseases amongst many others contribute significantly to the medical and economic burden of the country. According to the Council of Scientific and Industrial Research (CSIR), nearly 7 crore Indians suffer from rare disorders of which at least 40% are genetic in nature. Unfortunately quite a few of these genetic disorders are either undiagnosed or misdiagnosed due to insufficient clinical and diagnostic resources and even if these are known the treatment is not always available resulting in huge physical and monetary costs to patients who very often have to suffer all their lives. Rare diseases are also more common in children and are responsible for 30% of the deaths during infancy. There is a need to address these challenging issues by investing more funds into biomedical and genetic research to identify the main causes of diseases and discover novel therapeutic targets and strategies to improve healthcare in the country.

It has also been observed that the genetic data of the Indian population is grossly under-represented in worldwide genomic studies and thus clinicians need to rely on the gene data banks from UK, USA, or the Caucasian population. This does not serve us well as this data is not reliable. Given the unique diversity in the Indian population, which is absent elsewhere, genomic research only seems to be the way forward to reduce the impact of diseases. Practicing precision medicine utilizing this indigenous data will also help to reduce inequities in how healthcare is financed. It is estimated that the government expenditure was about 1.4% of the GDP in 2017-18 while the private expenditure was three times this number. Given this pattern correct and early diagnosis and removal of trial and error through pharmacogenomics will greatly help to reduce this cost.

The department of Biotechnology has made a considerable breakthrough to solve the struggle for genetic data in the last one year by mapping the genomes of 1008 people across different ethnicities. While this is a step in the right direction it is still a drop in the ocean given the sheer diversity and sub-population of people in India. In China and the US, almost a million people are included in research studies therefore it is essential for the government to scale up the sample size and include more people as well as reduce the cost of collecting such data. Attention also needs to be given to carry out newborn screening pilot projects on a national scale to lower the burden of rare diseases and also train more clinicians, researchers and councilors to correctly interpret the results for the benefit of the common people. The government also needs to initiate researches on gut microbiomes and gene editing – a group of technologies that give the scientists the ability to change a person’s DNA by adding, removing or altering genetic material at particular locations in the genome- to help treat cancer, metabolic and cardiovascular disease as well as neurodegenerative conditions like Huntington disease, Alzheimer and Parkinson that have no specific diagnostic approaches or treatments.

Our country is definitely active in the field of medical research but it is still not doing as much as it can. The discoveries that are being made are only a fraction as there is so much that can be learnt from our diverse population. India can truly become one of the models to study genetic variations and how these relate to disease and drug responses. It is now time for the government to increase funding and formulate policies to create a national genomic platform, which will improve the healthcare system so that our future generations can lead healthier lives without having to suffer tremendous financial burdens.

About the Author

Chandni Luthra is the Co-founder and Director of FutureMed a molecular genetic company that specializes in genetic testing for wellness, precision medicine as well as clinical genomics. FICCI Ladies Organization (FLO) in association with the Ministry of Micro, Small & Medium Enterprises Government of India recently selected her amongst 100 successful women entrepreneurs in MSME.

Source: https://insightscare.com/need-to-strengthen-healthcare-research/ 

Potential Realized: More than a Vision at Gillette Children’s Specialty Healthcare

 

An unwavering commitment to ensuring the best care for all children and a partnership between patients and providers is the deeply rooted legacy that drives the mission of Gillette Children’s Specialty Healthcare. 123 years ago Dr. Arthur Gillette and Jessie Haskins, a student who had grown up with a complex condition, successfully lobbied Minnesota lawmakers to establish the nation’s first hospital dedicated to the care and treatment of kids with disabilities. Today, this legacy and care model continues to guide the more than 1,400 people who work at Gillette as they care for children with complex conditions, rare disorders and traumatic injuries.

Defining a Unique Care Model

Based on her own experiences with healthcare as a child, Gillette President and CEO, Barbara Walczyk Joers believes it’s important that everyone on the care team has a deep connection to the hospital’s mission and focus. “Most of our patients will require continued care and therapy throughout their life, so we built and organized our resources around a care model that treats the entire condition of a child and looks at their life goals, versus one episode of care. Such a plan helps patients and families think about what’s possible and how to reach their full potential now and throughout life.” Joers says.

This integrated practice model stands out in the current environment of consolidation in health care that can often leave patients and families feeling lost as they seek to navigate care. “Our care model is why patients choose Gillette” says Joers, “and why we feel that giving patients and families a choice in their care provider remains a priority for Gillette.” The Gillette Care Model is built on three pillars leading to the fulfillment of the vision—“Potential Realized.” These pillars are: Focused Expertise, Proactive Care Planning and Trusting Relationships.

Barbara Joers explains: “At Gillette we are fortunate to be organized around a core of well-trained and devoted pediatric specialists and sub-specialists in areas including Physical Medicine and Rehabilitation (PM &R), Orthopedics, Neurology, Neurosurgery and Complex Care Pediatrics. This depth and breadth of expertise forms the foundation for our care – many of our providers are truly the best of the best, leading research and filling conference sessions around the world when they speak.”

This amazing depth of expertise, combined with 120-plus years of experience allows Gillette care teams to develop innovative and sophisticated care plans with families, says Joers. Proactive, individualized care planning, along with focused expertise, help establish and build trusting relationships with patients and families. “Parents come to us in a moment when their hopes and dreams for their child have been thrown into doubt,” Joers continues. “Maybe this parent just heard a diagnosis for their child or they witness their child endure a trauma due to an accident. Whatever brings a parent through our doors and to seek our help is often due to something life changing and unexpected.”

Joers Inspiration

Joers speaks from experience. Her dedication to patient care came at an early age. “When I was five I was found to have a middle ear condition that impacted my hearing, facial structure and speech. From there, several surgeries were done. During one of those surgeries I had a bad experience with a clinical staff member. While my surgeon was tending to the result of the incident, which was in the middle of the night, I asked how to make sure this doesn’t happen again. Instead of giving me orders or ideas for when I was hospitalized next – he leaned down to me and said “run a hospital—and do it right.”

This experience drove Joers to pursue a career in hospital administration and ultimately to Gillette where she remains focused on the vison established by Dr. Gillette and the patients Gillette continues to serve.

This clear focus on mission and vision can help clear the fog of anxiety and help everyone surrounding and supporting this child to find a path and plan. “Our first goal is to let the family know that we’ll help them discover and understand everything their child can do. As we work to help children reach their full potential strong bonds will develop.”

The Gillette care model has a broad impact: the hospital sees patients from every Minnesota county each year, and over the last three years has seen children from all 50 US states and over 30 foreign countries.

Pediatric Rehabilitation Expertise and Much More

While recognized nationally and internationally for their rehabilitation program, Gillette Children’s Specialty Healthcare is that and more. “We began as a surgical hospital, offering interventions to correct musculoskeletal deformities to improve function and mobility” states Joers. “From the beginning our patients needed rehabilitation and time to regain physical function. Over time our teams saw the importance of physical medicine and rehabilitation, physical, occupational and speech therapies, as well as custom orthotics, prosthetics and seating services in offering a full system of care for the children we treat.”

Gillette’s Pediatric Rehabilitation Program is one of the most comprehensive in the nation and is just one of eight in the U. S. and only hospital in the Upper Midwest to earn the Commission on Accreditation of Rehabilitation Facilities (CARF) for pediatric specialty program and brain injury. Gillette has the highest concentration of pediatric rehabilitation medicine specialists in the nation who work with children, adolescent and select adult patients with a wide variety of complex conditions. “Our rehabilitation services, both inpatient and outpatient, are among the best in the world and our outcomes show it” states Joers.

A shining example of Gillette’s rehabilitation care model in action is the Cerebral Palsy program. “We are one of the top centers globally, really – for children with Cerebral Palsy” explains Joers. “We take a long-term, team focused approach to the proper diagnosis, management and selection of interventions in the treatment of Cerebral Palsy. The family will work with a team of providers including PM&R physicians, orthopedic surgeons, neurosurgeons, neurologists and physical therapists to understand the type and severity of Cerebral Palsy.” Gillette’s teams engage with physicians and clinicians from multiple countries to share protocols and to help advance care for children regardless of their location.

Honored and Humbled to be Trusted

While Gillette remains focused on its core mission, Joers also recognizes that “change is constant in healthcare” and the hospital remains ready to adapt and move forward to ensure the best continues care for its patients. In 1890, Dr. Gillette addressed the Minnesota Academy of Medicine and said “Overcoming deformity is the first thing; the next and very important too, is to keep it so.” Barbara affirms this legacy of commitment saying, “Everyone who works at Gillette is driven by this responsibility and are inspired by our patients and our mission each day. At Gillette we want ALL children to be given the opportunity to realize their potential.”

Source: https://insightscare.com/potential-realized-more-than-a-vision-at-gillette-childrens-specialty-healthcare/

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What do we know about World AIDS Day?

World AIDS day is observed every year on December 1 since its initiation in 1988. It is an international day dedicated to spreading awareness regarding the AIDS pandemic and the HIV infection, and the mourning of all those individuals affected by this disease.

AIDS stands for acquired immunodeficiency syndrome which is a fatal condition caused by the human immunodeficiency virus (HIV). The HIV virus invades the human immune system of the patient and reduces its resistance to other diseases. AIDS is a set of symptoms and illnesses that develop at the final stage of HIV infection, if left untreated. With adequate treatment, the lifespan of HIV infected individuals can be prolonged to an extent.

This day is observed by healthcare organizations across the world, support groups, non-governmental organisations and even government and health officials, often with awareness and education regarding this issue.

Currently, around 38 million people are living with HIV or AIDS. Among them, approximately 81% of people with HIV globally knew about their HIV status in 2019.

Till this day, around 75.7 million people have become infected with HIV since the start of the pandemic. More than 32.7 million people have died of HIV or AIDS, despite it being identified only in 1983, making it one of the most destructive pandemics in history.

Incredible amount of scientific research has been conducted for the treatment of HIV, there are laws to protect people afflicted with HIV and we understand so much more about this condition.

Although the masses have a generic idea about this disease, people are still unclear on the facts about how to protect themselves and others. Societal stigma and discrimination remain a reality for many people living with this disease.

We need initiatives like the World AIDS Day because it reminds people and the government that HIV has not gone away — there is still a vital need to raise awareness, fight prejudice, and improve education.

Global key-points:

• 2/3 or all people battling HIV live in the WHO African region. This is around a total of 25.7 million people.
• The low and middle-income countries (LMIC) are the most hit region with HIV.
• In the last two decades, the world has observed a drop of 39% of new HIV infections and a 51% reduction in the number of HIV related deaths. 15 million lives have been saved due to antiretroviral therapy.

Let us do away with some common myths about the HIV infection.:

• HIV is not transmitted through touch or any other physical contact like kissing, hugging, sharing food, etc.
• There is no cure for HIV whereas with treatment one can live a long and healthy life.
• HIV is not associated to any specific community, sexual orientation or any such thing whatsoever.

The universal symbol of awareness and support for people living with HIV is the red ribbon. The idea of the red ribbon was conceived in 1991 by a group of 12 artists for a project for visual AID, a New York HIV awareness arts organisation.

In 2020, the world’s attention has been focused on the covid-19 pandemic, and how lives and livelihoods are affected by it. As we adapt to change of world dynamics in covid-19, we should be careful not to draw a blind eye to other public health issues such as AIDS.

Since the inception of the first world AIDS day about 30 years ago, a vast amount of progress to prevent and treat HIV has been made — to help people with HIV live long, healthier lives and prevent HIV transmission.

Source: https://insightscare.com/what-do-we-know-about-world-aids-day/