Navigating Healthcare – Patient Safety and Personal Healthcare Management

May the Fourth be With You

It’s the artificial holiday that celebrates the play on words from Star Wars movies – a rallying cry

The list of suggested actions from the Starwars site may not be to everyone’s taste and includes everything from

  • Holding movie marathons
  • Dress up as a Star Wars Character
  • Star wars food including blue milk!
  • Getting a Star Wars Tattoo

 

But this year I follow Yoda’s advice:

“Pass on what you have learned”

Specialty Pharmacy

This year I attended the Asembia Specialty Pharmacy Summit held this time each year in Vegas at the Wynn/Encore resort. This is the largest conference for specialty pharmacy but as Alex Fine noted and I agreed –

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All pharmacy is moving rapidly in the direction of specialty as we head into a world filled with precision medicine customized to the individual. On the one hand, this is an exciting proposition – at least to me. I am always reminded of the great scene in Monty Python’s Life of Brian

You are all individuals…..we are but medicine has not treated us that way. Historically the path to understanding disease was based on grouping patients, diseases, signs, and symptoms into logical groups that helped decode underlying cases of a disease.Just think of the seminal work of Louis Pasteur and Robert Koch who established the germ theory of disease and the resulting incredible advance in outcomes that derived from that block of work when Joseph Lister published in 1867 his Antiseptic Principle of the Practice of Surgery (met by substantial skepticism and took years to be widely accepted and adopted). This was just the start as we came to understand causative agents behind diseases that had vexed the profession. Treating someone with an infection with Penicillin thanks to Alexander Fleming’s work in 1928 was just one of many advances that grouped patients based on similarities of their disease. This methodology has served us well but the sequencing of the human genome- completed in Jun 2000 would have a big impact on this thinking.

Just think of the seminal work of Louis Pasteur and Robert Koch who established the germ theory of disease and the resulting incredible advance in outcomes that derived from that block of work when Joseph Lister published in 1867 his Antiseptic Principle of the Practice of Surgery (met by substantial skepticism and took years to be widely accepted and adopted).

This was just the start as we came to understand causative agents behind diseases that had vexed the profession. Treating someone with an infection with Penicillin thanks to Alexander Fleming’s work in 1928 was just one of many advances that grouped patients based on similarities of their disease. This methodology has served us well but the sequencing of the human genome- completed in Jun 2000 would have a big impact on this thinking.

From: http://sandwalk.blogspot.com/2016/02/happy-birthday-human-genome-sequence.html

Over the course of the last few years, we have seen a clear move towards the individualized understanding of patients and disease accompanied by the inclusion of patients (Patient Engagement).

Patient Engagement and Access

There was a clear theme in the messages from various presenters that offered a clear vision of the push towards the consumer and patient engagement and a clear desire to find a path to delivering access to everyone that was captured by Liz Barrett from Pfizer in her keynote presentation and summarized with her slide – The 4 Tenets for Healthcare:

Access to quality
Incentives
Long-Term Value
Competitive principles

Providing access that overcomes the current challenges but builds in incentives for everyone in the system – not just the providers and hospitals but also patients and everyone involved in healthcare. This is the principle of competition without which systems tend to decline and ultimately stop working. There are people who perceive competition and capital principles as contraindicated in healthcare that we want to provide to everyone. I think these ideals can and should co-exist – without competition motivation disappears and efficiency will decline.

To achieve this we should take a book out of Yoda’s wisdom to pass on this wisdom and my key message for this day. Benefiting from the extended community. Our ability to connect and access people and resources has never been better. The need to remember data is much reduced:

GIYF

This access goes far beyond the data and to people and resources. Can you imagine making a purchase without looking at ratings and reviews on sites – I can’t. Yet the reviews are from people I don’t know and have not met – yet I trust them. This works because of the human desire to help others (this, by the way, is the reason that social engineering as carried out by hackers is so successful – this will be the subject of a post coming up in the future). But this creates an incredible set of resources and talent available to you.

Patient Communities

Some of it is formalized like the early website entry in this area: Patients Like Me. But extends to informal interactions on social media channels like facebook and one of my favorite: Paying till it Hurts. Then there is your extended family and friends who all want to help. You will find people who have been through similar experiences, will have tips and ideas on how to deal with problems that others have faced and have conquered

I was lucky to hear Arnold Schwarzenegger present as the keynote at this recent conference – his recurring theme was that he was not a self-made man but his success was the result of all the help and support he received from others

So use the power of the Force – it is your network, your friends, family and those around you.

Derive strength from them, have them provide tips on what small changes you can make to improve your health and then help keep you on track – nothing like knowing that you are being watched to help keep you on track.

One of my most successful personal health drives was base don a weekly self-reported weigh in for myself and two colleagues. Anytime I felt I was going to make a poor choice on food or exercise I just thought of the weekly chart and where my line would be relative to my colleagues and I did not want to be the outlier.

Have you had success helping friends and family? What works and what doesn’t. Is there a special trick or insight you could share that might help someone else – share it now and help the community.

 

May the Fourth be With You was originally published on Dr Nick – The Incrementalist

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Digital Health Summit

This is Australia’s premier health innovation convention on the technologies that are revolutionizing healthcare and the implementation of ehealth initiatives and I was honored to be asked to give a keynote presentation at the Digital Health Summit taking place in Melbourne 29-30 March 2017. The bonus was listening to so many great presentations throughout the day from some great speakers.

The Perfect Storm for Healthcare

The opening session that set the tone for the future came from Alfred Poor, Editor for Health Tech Insider who eloquently described the perfect storm of The Internet, wireless communications and the pervasive smartphones that last year shipped 1.5 Billion – enough to provide one for every 5 people on the planet. Innovation that can take off the shelf technology and create accessible telehealth programs that reduce readmissions from 20% to 6%.

Everything from wearables devices to non-invasive sensors and monitoring to allow the capture of data on patients, improve care and treatment options and allow the elderly to safely stay in their home. Innovations that address the major challenges around the world in the society that needs to adapt and focus on wellness:

2009 Continua Health Alliance Brigitte Piniewski, MD

 

Stuart Smith took us through the potential for Gamification: exploring the magic of video games in health and rehabilitation providing repeated examples where implementing Gamification to engage with patients was seen as some kind of Voodoo by his colleagues who were amazed at the incredible success and high utilization by patients

He showed examples of rehabilitation patients using Sony Play Station with Microsoft Kinect that made the rehab program a positive experience and even had the audience dancing along with Dance Dance Revolution explaining how they had adapted this to elderly patients and using Glenn Miller and Big band music

With the explosion of data comes increasing risks to the security and privacy of data and Nathan Steiner Veeam Software detailed the expanding risk and the staggering incidence of data breaches that extend well beyond healthcare which remains the top target for hackers. No surprise and notably the FBI highlighted the hacking community that is targeting vulnerable FTP servers.

Julian Bright and Adrian Medhurst from Amelie AI took the audience on an interactive journey with an Artificial Agent focused on mental health issues and braved the Live Demo gremlins as captured on this Periscope:

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Personalized Medicine

 

Dr Robert McLeay, Founder, DoseMe highlighted the changing nature of medicine that improves on the old style model of guess work on drug choice and dosage and builds individual models to reduce the side effects and maximize the selection of the right drug for patients first time round – practical personalized medicine available for your patients today

Professor Phil Robinson, Head, Cell Signalling Unit, Children’s Medical Research Institute (CMRI), co-lead of The Australian Cancer Research Foundation International Centre for the Proteome of Cancer (ProCan) shared the exciting international progress being made in fighting cancer with industrial scale proteomic system that they have set up in the Children’s Medical Research Unit that was Announced by Vice-President Joe Biden on 17 July 2016 in Melbourne as part of the Cancer Moon shot that has rapidly grown to include 10 Nations, 18 Institutions. They are now producing huge amounts of proteomic data and creating Digital Proteme Maps that has been committed to the public domain indefinitely to facilitate ou sharing and learning and will be providing new options for targeting cancer. You can see more about their project here.

Digital Health Innovations from the Front Line

 

We heard from 2 clinicians from the US Aenor J Sawyer, MD, MS Director, UCSF Skeletal Health Health Innovation &Tech in Ortho University California, San Francisco and Dr Megan Ranney, Associate Professor of Emergency Medicine; Director, Emergency Digital Health Innovation program, Brown University. They shared the experiences from UCSF and Brown University of applying digital technology in the clinical setting offering insights into the use of sensors, Virtual reality and how to evaluate the technology in the context of a busy hospital and Emergency room.

 

After lunch, the panel session on the future of aging was hosted by The Hon Bronwyn Pike, former Victorian Minister for Housing, Aged Care, Community Services, Health, Education, Skills and Workforce Participation focusing on the innovations in place and how the sector can benefit from the data and analytics increasingly available from the digital transformation taking place. and then a detailed review of the great Victorian Stroke Telemedicine Program that has been rolled out with great success by Prof. Christopher Bladin, Program Lead – Victorian Stroke Telemedicine Project, The Florey Institute of Neuroscience & Mental Health with a proven protocol that is statewide and heading nationwide

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Social Media in Healthcare

 

Professor Enrico Coiera, Director, Centre for Health Informatics, Australian Institute of Health Innovation offered some tantalizing insights into the way that social media is changing the way we think about health. Not only does Social Media offer a means of reaching and engaging with patients it is also a potential avenue for treatment. The social propagation of obesity as detailed in this New England Journal of Medicine article: Network Medicine — From Obesity to the “Diseasome” and these complex networks are of direct relevance

He left us wondering of social media can treat social disease (his BMJ article Social networks, social media, and social diseases talked about this concept)

Modeling of Data

 

James McCaw, Associate Professor in Mathematical Biology, The University of Melbourne shared insights into the modeling for influenza forecasting and pointed out that despite how much progress we have made in medicine the influenza pandemic of 1918/9 (Spanish Flu) would have a similar effect on the population today

The models for prediction have improved but he likened them to weather forecasting capabilities from the 1970’s

 

It was a great day filled with insights from a wide selection of experts covering a huge range of areas. All the talks were engaging with practical tips and wisdom that the attendees could take back and use.

Digital Health Summit was originally published on Dr Nick – The Incrementalist

Exciting Progress with CRISPR

Posted in Genetics by drnic on March 28, 2016

This is an exciting and positive development in Genomics using the CRISPR technology – here source scientists have removed the HIV-1 genome from the genome of human immune cells
Gene editing could now be added to the armament of clinicians to fight diseases including infections

Exciting Progress with CRISPR was originally published on Dr Nick van Terheyden, MD

Notable Medical Advances

Posted in Genetics, Innovation, science by drnic on December 28, 2015

Jerome Groopman’s highlights of medical advances form 2015: source
Coming at the bottom of his list but what continues to amaze me is the Placebo effect – well known in its effectiveness when offered without explanation but more surprisingly is that it is still effective even when the patient knows he is being given a placebo!
Other highlights include a new approach to cancer treatment that blocks its growth, the incredible insights emerging from our continued expansion of knowledge on the human genome (a different approach to cholesterol management)

We live in exciting times of innovation and medicine is benefiting greatly from advances in our understanding and science behind disease and the workings of our world and bodies

Notable Medical Advances was originally published on Dr Nick van Terheyden, MD

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Stem Cells – Myth and Reality

Posted in Genetics, Healthcare Information, Stem Cells by drnic on November 16, 2009

NPR ran an interview (Stem Cells the Untold Stories) with Dr Doris Taylor a pioneer in the science of regeneration who is known for bringing dead heart tissue back to life. The discussion was revealing on so many fronts and is worth highlighting some of the details especially as they relate to Stem cells. As she points out if

we had found different vocabulary to discuss stems cells in public at the outset, distinguishing between fetal and embryonic cells, explaining the origins of the cells used in research, and illuminating the larger story of stem cells.

There is a significant difference between these two forms and they get confused in the media and in general discussion.

stem cells are really very simple. They’re cells that can do two things: They can make more of themselves or self-renew, and they can, quote “differentiate,” become a lot of different things, differentiate. And, really, we have stem cells everywhere in our body. …. I believe aging is a failure of stem cells. That every organ or tissue in our body for the most part has stem cells in it…..The word that’s used is embryonic stem cell, and the concept is that we’re taking fetuses and using those to create cells for medicine. That is just not true. Fetal cells are already muscle, already heart, already lung. They’re not stem cells anymore

In fact Stem cells are involved in healing and repair all the time – every time you scratch or damage you skin stem cells help int he repair. As we get older that repair process declines in effectiveness and how good the repair looks to the original. Think about the baby who gets a cut vs the elderly mother. The baby might show no scar, the mother a much clearer scar indicating the location, size and severity of the damage.

Stem cells are involved in so many aspects of our bodies. Linked to aging and the clock on every cell – the little piece of DNA at the end of every chromosome called a telomere. Every time your cell divides this gets shorter eventually reaching a point (cell death?) that is too short and no more division is possible. Unfortunately stress shortens these telomeres and hence actually ages your stem cells. If you believe that’s true (and the evidence is compelling and I do) that means it ought to be possible to reverse stress and make your cells younger. In a study of one (Matthieu Ricard a famous French philosopher Buddhist who’s worked with the Dalai Lama who wrote a book called Happiness) reviewed stem cells in the blood before and after meditation – they found a huge increase in the number of positive stem cells in blood.

Largest increase I’ve ever seen after 15 minutes of meditation.

Start meditation now – in fact I can recommend this book – The Monk Who Sold His Ferrari for all you business types! And other types of damage or disease can be seen as a failure of stem cells – cancer for instance

Cancer is basically cells gone bad. It’s cells that no longer know when to stop dividing. What’s a stem cell? A stem cell’s a cell that can self-renew, make a lot of itself and keep dividing, and become a lot of different things. What’s a tumor cell? It’s a cell that can make a lot of different cells and become a lot of different things. In some ways they’re very similar, but a stem cell has the signals that know when to stop dividing. Tumor cells don’t.

Cancer could be some dysfunction of stem cells as the body tries to combat aging and the failure of the stem cell repair mechanisms.

Some highlights in Stem Cell research suggests

  • that decreasing stress increase the number of stem cells that you have in your body and in your blood
  • Meditation increases the number of positive stem cells
  • men and women have different numbers and different kinds of stem cells – perhaps part of the reason why men develop heart disease earlier than women as they lose stem cells faster
  • Cancer is some kind of dysfunction of stem cells
  • Aging is reversible and stem cells are part of the answer

As Dr Taylor puts it

Drive carefully. We have two cemeteries and no hospital. And that’s really how we have to approach this field. Drive carefully. And yet we’ve got to keep driving because it matters. It matters. And we can already do things that 10 years ago we thought were absolutely undoable

Don’t wait for something to touch your life to understand the opportunity before us

people usually don’t care about things until it touches their lives. And once it touches their lives their perception changes. And I can’t tell you the number of people who don’t believe in research or don’t believe in science or don’t believe in innovative approaches to medicine until it’s their daughter or son or brother. And then all of a sudden, they’re at least open to the conversation

Go spend some time in the pediatric intensive care facility, with the disabled child struggling to sit up, the Veteran who lost a limb, the incapacitated grandparent who cannot watch her grandchild play because she needs oxygen therapy constantly, or the parent who wants to see their child reach double digits.

I’ll publish any intelligent commentary, debate or opinions. In fact I welcome intelligent discussion and debate. Can you see it or is such a polarizing issue that we will medicine continue to languish with restricted access to essential tools and techniques derived from Stem Cells?

The Fountain of Youth Available Now – Side Benefits Included

Posted in Genetics, Healthcare Information, Nutrition, Preventative Healthcare by drnic on July 9, 2009

It is no big surprise to see the results of a recent study of a long running study of primates that shows significant value in a low calorie diet. This article reported on MedPage here in July 2009. The headline here:

researchers have shown that restricting calories in primates maintains their youth and prevents age-related disease

Let me state that again:

researchers have shown that restricting calories in primates maintains their youth and prevents age-related disease

The research is exciting since this represents a real way to reduce disease and extend high quality life. Unfortunately the nature of society today makes for an interesting slant on this information and so the the researchers are interested in the possible short cut that this research might help develop:

open the door to drugs that would mimic so-called caloric restriction

Sigh……..so much better to actually use the information to drive healthy behavior.

The effect has been know for many years in other animal models and a peak into other research papers reveals similar findings. The Annals of New York Academy of Sciences 25 Jan 2006: Caloric Restrictions in Primates demonstrated caloric restriction (CR – the fancy term for low calorie dieting) has significant benefits:

that reproducibly extends mean and maximal life span in short-lived mammalian species. This nutritional intervention also delays the onset, or slows the progression, of many age-related disease processes. The diverse effects of CR have been demonstrated many hundreds of times in laboratory rodents and other short-lived species, such as rotifers, water fleas, fish, spiders, and hamsters. Until recently, the effects of CR in longer-lived species, more closely related to humans, remained unknown. Long-term studies of aging in nonhuman primates undergoing CR have been underway at the National Institute on Aging (NIA) and the University of Wisconsin-Madison (UW) for over a decade. A number of reports from the NIA and UW colonies have shown that monkeys on CR exhibit nearly identical physiological responses as reported in laboratory rodents. Studies of various markers related to age-related diseases suggest that CR will prevent or delay the onset of cardiovascular disease, diabetes, and perhaps cancer, and preliminary data indicate that mortality due to these and other age-associated diseases may also be reduced in monkeys on CR, compared to controls

But the latest research linking this finding to human’s is more recent (though in all honesty is this surprising to anyone!). But the news is even more exciting. The low calorie group had some additional side effects:

  • Zero incidence of Diabetes in the CR group (compared to 30% in the other group)
  • A reduction in incidence of Cancer of 50% in the CR group
  • 50% reduction in Cardiovascular Disease in the CR Group

Do you need anymore incentive on healthy living? I know I don’t! Reduce your calories now – your body needs you to!
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PGD – Pre Implantation Genetic Diagnosis

Posted in Genetics, Healthcare Information, Obstetric by drnic on October 22, 2008

Listened to a fascinating podcast on the NPR On Health from Oct 6 (you can listen below or download it here) that featured a section on PGD or pre-implantation Genetic Testing. The article featured parents of a child who suffered from Spinal Muscular Atrophy (SMA)

This couple watched their son died 8 weeks after birth from a rare genetic condition Spinal Muscular Atrophy (SMA) (you can find a support group here. The couple wanted more children but not surprisingly after this harrowing experience they wanted more children but did not want to have another child go through this experience.

Another couple who’s father has a strong genetic component of colon cancer in his family also elected to undergo the process to select embryo’s that do not carry this gene that predisposes the carrier to a higher chance of cancer.

Both cases generated a vigorous response from many religious groups who object to any form of intervention and especially so in the second case that where objections included the concern of this being the first step towards gene manipulation towards the “perfect child”

I don’t know the answer – needless to say as with all things they can be used for good and bad purposes (a quick search online for PGD features “Gender selection” and “IVF Baby Guarantee” sites). At the end of the day we all have to arrive at our own position and comfort level with the application of technology. While I respect the views on both sides I defer to some great personal friends of mine who had a child in the 80’s who was eventually diagnosed with Angelman Syndrome (you can find out more about this condition here). The resources available on this were not available when they where going through this and I remember vividly the difficulties for this family as they struggled to understand this condition and its impact on them, their existing family and any potential future family. They have been a model family caring for their child in a loving and nurturing family environment. They overcame enormous challenges and difficulties with little help and love all their children as all parents to.

They had to make many choices, often without the benefit of knowledge or data and did the best that anyone could do in those circumstances but were clear about one thing – they did not want to bring another baby into the world with this condition.

I know I am no position to “understand” what they have been through or deal with every day and no matter my position I respect them for all their choices and would encourage everyone to be the same. Respect other people’s choices without the reverting to harmful rhetoric and imposed viewpoints. Choices rarely if ever come in black and white and we all do the best we can to make the right ones. In the case of PGD it’s a tool that offers great potential for those that need it.

Section runs from ~ 5:35

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