Navigating Healthcare – Patient Safety and Personal Healthcare Management

Patient Centered Systems

What will it take to move our healthcare system to a truly patient-centered system? We know based on multiple data points that engaged patients have a big impact on the successful outcome of treatment. Leonard Kish cited the phrase back in 2012

Patient Engagement is the Blockbuster Drug of the Century

Referencing a 2009 Kaiser study of coordinated cardiac care and comparing to those not enrolled in the study

“patients have an 88 percent reduced risk of dying of a cardiac-related cause when enrolled within 90 days of a heart attack, compared to those not in the program.”

“clinical care teams reduced overall mortality by 76 percent and cardiac mortality by 73 percent.”

And this study in Telemedicine and e-Health. Dec 2008; Vol.14 (10): 1118-1126 that showed impressive results for chronic disease management:

  • 19.74% reduction in hospital admissions
  • 25.31% reduction in bed days of care
  • 86% patient satisfaction
  • $1,600 average cost per patient per year, compared to $13,121 for primary care and $77,745 for nursing home care
  • 20% to 57% reduction in the need to be treated for the chronic diseases studied, including diabetes, COPD, heart failure, PTSD, and depression

 

Patient Data Ownership

I believe as do many others that the patient is at the center of everything we do and deliver in healthcare. By placing the patient and their information at the center of care and allowing them access and control we empower them and enable a model that moves away from the historical paternalistic delivery of healthcare to patient-centered and enabled care. It does come with challenges since many people contribute to that care and the current administrative and financial configuration focus the management and ownership of data with providers, healthcare systems and payors. While many patients want access to their data and some even want to own and manage it, many do not and are ill equipped to be responsible for this data. Perhaps what we need are some independent services and providers who aggregate, manage, secure and maintain patient data on behalf of patients – much as banks do with our money. There was some hope when Google and Microsoft jumped into healthcare offering Google Health and Microsoft Health Vault respectively. Microsoft’s version continues to this day – google withdrew theirs and Sergey Brin was widely quoted when he said

“Generally, health is just so heavily regulated. It’s just a painful business to be in, I think the regulatory burden in the US is so high that think it would dissuade a lot of entrepreneurs.”

But while complex, not insurmountable and as he rightly points out

“I am really excited about the possibility of data also, to improve health”

I am too and while there remain many challenges associated with securing and sharing that data the “entrance” of these alternative participants into the healthcare space – some perhaps looking at this from a simple employee perspective, is an opportunity for new ideas, insights, and people applying the collective brain power to one of our most pressing problems. I continue to hear from colleagues and friends of companies that are exploring and looking at healthcare. UPS highlighted their healthcare focus and the potential for 3-D printing in a recent tweet:

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And I heard from a friend that Dyson even has a healthcare “focus”.

Protecting Patients

There are some major concerns as these data-focused companies offer access but do so with agreements that contain so much legalese as to be unintelligible and opaque to the consumer who may well be giving up much more than his own personal data but potentially giving up his future health. The GINA act offers some protection to individuals who in sharing personal genomic data that tag them with a “pre-existing’ condition could have found themselves unable to access care. But the act did not go far enough failing to address the issue of other insurance and employers who can use this data to deny access or coverage and perhaps even employment?

We need the combined power of this patient data to create the insights into diseases but not at that personal expense. There are many technologies on the horizon that offer a potential path to help achieve this and blockchain represents an interesting innovation of decentralized secured data that offers individualized control and dynamic revocation options for access. If you are interested in learning more about Blockchain this article in HealthcareIt News is a good primer for its potential in Healthcare: How does blockchain actually work for healthcare?. It is not a panacea and the fundamental rights and ownership still need to be addressed without giving away the farm to corporations and businesses.

Interoperability

The existing healthcare system incentivizes behavior that is in opposition to a scalable nationwide vendor neutral interoperable patient-centered data. Our model has multiple groups who have a vested interest in the control and ownership of data (for example Payers, Providers, Patients and even employers). Each has their own economic and commercial drivers and in many instances, these do not coincide with open sharing of data. In a system that is driven by activity and delivering care (Fee for Service) sharing data could mean a reduction in work and income. Until our reimbursement system moves to a more holistic care model that focuses on wellness and outcomes and incentivizes behavior that delivers better health and outcomes for patients through cooperative and coordinated care and ultimately equitably rewards all the contributors to these outcomes we will remain stuck in the quagmire of limited interoperability.

The key to a patient-centered interconnected care model is the free flow of data between all the areas responsible for delivering care. We moved away from the single index card medical record held by your personal physician who was the focal point of care and care coordination to a distributed team-based model of care that encompasses multiple areas and people. In some instances, thatcher coordination may be carried out, at least in part by the patient or their family members, and they need to be included and ultimately in control of the data and its flow. The only way this team can deliver excellent care is through the frictionless flow of enhanced data and knowledge. This information flow must include the patient and all their family members that are authorized, interested and engaged in their care. Data should be shared with the patient’s consent with everyone concerned and available for as long as it is needed to deliver care but this access should be flexible enough to allow it to be revoked or removed when it is no longer needed or necessary

Welcome to the Fray

I am a big fan of learning from other industries and perspectives and spoke about this at HIMSS Conference in Orlando

The Best Exotic Marigold Hotel and I am excited to see the rush of companies and people into the healthcare space but for those stepping in and thinking about data and the ownership and control of this data, I would suggest this requires a new way of thinking. Much like security – patient access and control needs to be baked in from the start. Taking ownership and rights away from patients will stall progress and anger your constituents and community. As ePatient Dave would say or better yet sing:

Give me My Damn Data

Here’s hoping that these new players see the value of the engaged patient and include some of these principles in their march towards our common goal of better more cost effective healthcare. For the large organizations thinking about the data, remember you and your family members are patients too. The following thoughts are offered as some basic guiding principles on data stewardship:

  • Patients want control of their own data,
  • Patients want to be able to share safely and securely share their data with all their care providers and participants (this will include family members and friends)
  • Patients want granular control of some elements of the data limiting individual access to certain elements and areas
  • Patients requires a full audit capability tracking who has access and has accessed their data
  • Patients want to be able to easily and dynamically revoke access
  • Patients will share their data for research and benefit of others but their contributions need to be recognized and accounted for
  • Data cannot be used against Patients to deny coverage or increase their costs

 

What have I missed – what controls or limits would you place on your data that would make you more willing to share your data. What would stop you from sharing your data and why?

 

 

Patient Centered Systems was originally published on Dr Nick – The Incrementalist

Happy Birthday to my Best Friend

Posted in Inspiration, Kenya, life by drnic on April 19, 2017

 

I married my best friend and today is her birthday. This post: If You Want To Be Successful, Marry Your Best Friend detailed exactly why.

In this world of individualized culture that focuses on independence and self-reliance I am happy to say I am not. We are one and success and failure is our success and failure. We are programmed to have relationships and to belong — for those of you skeptical or feeling like you need independence you might just be suffering from the “dependency paradox”. I give up nothing and gain everything.

people who are more dependent on their partners for support actually experience more independence and autonomy, not less

This is what I would term “Healthy Dependency” and something that contrary to some viewpoints that see this as a negative quality in a relationship it is not but rather makes me a better person, stronger and more independent, successful and happier. I depend on her — we share the ups and downs of life and travel this journey called life together

Happiness is an experience best shared and I am lucky to be sharing this with my best friend and wife

Palazzo Vecchio with Uffizi in the Background

“The need for someone to share our lives with is part of our genetic makeup and has nothing to do with how much we love ourselves or how fulfilled we feel on our own. Once we choose someone special, powerful and often uncontrollable forces come into play. New patterns of behavior kick in regardless of how independent we are and despite our conscious wills.”

I love traveling this road with you and wish you a very Happy Birthday — We are One

Or the African version from this African boy

Happy Birthday to my Best Friend was originally published on Dr Nick – The Incrementalist

Wise Up to Hidden Healthcare Fees

It’s perverse but the healthcare system in the United States is making you sick. Don’t believe me – then maybe you have a high-end plan with no deductible and full access and no ceiling. But there are not many of those and for the rest of us, I imagine your interaction with the system is as frustrating and stressful as mine – probably on a spectrum depending on your plan (High deductible plan or the more traditional Preferred Provider Organization (PPO) and co-payments.

 

Fee for Service Healthcare

The cynical view might be this is deliberate since our system remains firmly stuck in a fee for service model – healthcare providers are paid to do something…anything. From its original development, this made sense – our capacity to treat conditions was limited and the cost of these treatments in line with our ability to pay for them. But along this journey science and in particular the incredible progress of medical research got involved and we have been on a veritable tear of progress and innovation, or as the Exponential Medicine group would say Exponential progress.

Original from Foundation Teaching Economics

There is a continued push towards a more robust and accountable model – Accountable Care Organizations have been set up and these models of total care and coverage and responsibility tested for effectiveness and economic effect. There is lots of disagreement on the success or failure of ACO’s and it is fair to say that the jury is still out. But intuitively we know that taking care of the complete picture and being responsible for the total care of patients health is better for the patient and for outcomes. I have seen it time and again where individual mandates or focus induce unwanted/unexpected/unintended consequences elsewhere in the whole system.

Discharging Patients Early – Unintended Consequences

Discharging patients from the hospital early typically results in better outcomes. Early programs that incentivized this behavior and rewarded programs that got patients out of the hospital early were deemed successful but failed to take account of the downstream impact of readmissions resulting from too early a discharge and subsequent complications for that patient that could have been avoided.

Fixing a Broken System

The recent book “American Sickness” by Dr Elisabeth Rosenthal “An American Sickness” takes on the existing system and is filled with strategies for patients faced with mounting medical bills, an intractable and aggressive healthcare system that is unflinching in seeking payment and by many estimates the leading cause of personal financial crisis and insolvency. While the figures remain under debate my own personal reality living with a High Deductible Plan that has found me

  • Self-treating Fractures
  • Becoming my own compounding pharmacy and
  • Spending months and many hours fighting multiple bills

 

In the case of one screening procedure, that under the current regulations are fully covered but thanks to either mistaken coding or perhaps even deliberate coding, remains outstanding and in two of the three cases, the billing organizations despite my attempts at regular communications, response and protests were handed over to debt collection agencies.

So I am with Dr. Rosenthal and “breaking down the monolithic business”.

The situation is far worse than we think, and it has become like that much more recently than we realize. Hospitals, which are managed by business executives, behave like predatory lenders, hounding patients and seizing their homes. Research charities are in bed with big pharmaceutical companies, which surreptitiously profit from the donations made by working people. Americans are dying from routine medical conditions when affordable and straightforward solutions exist.

Employer Sponsored Insurance

Central to the challenges is the arcane concept that you access to healthcare and health insurance should be linked to your employment. As one friend of mine commented, “There are some who believe this is a deliberate policy on the part of employers to lock in employees to jobs they may not want but have to take because they need the health insurance and can’t afford the challenge or cost of changing (health insurance”. I don’t quite go down that rabbit hole and think Dan Munro’s explanation in his great book “Casino Healthcare

that detailed the history linked to the war effort and the need to find other incentives after they introduced: “An Act to further the national defense and security by checking speculative and excessive price rises, price dislocations, and inflationary tendencies, and for other purposes.” (EPCA) in 1942 – wages were frozen to stop inflation but as is so often the case left the door open for unintended consequences that found employers looking for ways to compete for a shortage of labor. And as they say what follows is history – Employer Sponsored Insurance (ESI) was born.

History of the NHS

It is interesting to note that the NHS model was also a product of the war that found the wounded servicemen and women in need of healthcare. A need that was serviced by the “Emergency Hospital Service” (aka Emergency Medical Service) that provided a model and experience to the country that became the model for what is now the NHS established in 1946.

But whatever the history, reasons, and background – this remains a millstone around American’s. It can add to job reductions and General Motors have stated that their employee healthcare costs add $1,500 – 2,000 to the price of every car they produce. It makes us less competitive internationally and crippling many with overheads that add to the cost of goods sold. It also puts employers at the table on healthcare decision making for their employers that present potential conflicts of interest given their need to service their share holders and remain profitable.

Finding a pathway to resolving this big intractable healthcare mess is going to take some major re-thinking and compromise on all sides. In the meantime, I suggest focusing on individual incremental approaches locally.

 

Incremental Steps to Coping With Healthcare

The list of 6 Questions to ask your doctor before your appointment and 5 questions to ask before you stay in a hospital are excellent resources from Dr. Elisabeth Rosenthal, that are featured in the book and on the website. So in the spirit of the incremental approach, I offer up two credit card size templates containing the

  • 5 Questions to Ask During Your Hospital Stay
  • 6 Questions to Ask Before Every Doctor’s Appointment

 

Formatted in a handy Avery 5371 White Business Card Template that can be printed – double sided and put in your wallet: Questions When Using Healthcare Avery Template 5371

Do you have any tips or suggestions in dealing with the healthcare system? Disagree with any of this – feel free to leave your comments or reach out.

Wise Up to Hidden Healthcare Fees was originally published on Dr Nick – The Incrementalist

This 3DPrint Heart-on-a-Chip Could End A

Posted in Uncategorized by drnic on April 11, 2017

This 3DPrint Heart-on-a-Chip Could End Animal Testing #DigitalHealth http://ow.ly/zXpY30aI8xY

Incredible animation of Globe of World A

Posted in Uncategorized by drnic on April 10, 2017

Incredible animation of Globe of World Air Traffic over 1 year #travel http://ow.ly/OKLJ30aI8pJ

The Arctic Ocean Is Becoming More Like t

Posted in Uncategorized by drnic on April 10, 2017

The Arctic Ocean Is Becoming More Like the Atlantic Ocean #science http://ow.ly/E0CE30aI83f

You Can Play By The Rules And Still Be I

Posted in Uncategorized by drnic on April 10, 2017

You Can Play By The Rules And Still Be Innovative as 23andMe proves with U.S. FDA http://ow.ly/mlvs30aI7V7

You can’t use #AI Without Great UX #Dig

Posted in Uncategorized by drnic on April 10, 2017

You can’t use #AI Without Great UX #DigitalHealth http://ow.ly/OF5p30aI7RF

The Idea of Blockchain as a Service from

Posted in Uncategorized by drnic on April 10, 2017

The Idea of Blockchain as a Service from IBM could Spur Wider Business Adoption #HCIT http://ow.ly/9Jjs30aI8u6

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