World Malaria day is today – Tuesday, April 25, 2017. Recognizing global efforts to control and perhaps one day eradicate this major killer that disproportionately affects my home country of Africa.
The WHO African Region continues to shoulder the heaviest malaria burden, accounting for an estimated 90% of malaria cases and 92% of malaria deaths in 2015. The WHO South-East Asia Region accounted for 7% of global malaria cases and 6% of malaria deaths. Three quarters of these cases and deaths are estimated to have occurred in fewer than 15 countries, with Nigeria and Democratic Republic of the Congo accounting for more than a third
Status of Malaria Today
Based on the WHO 2016 Malaria report there were 212 Million cases globally of Malaria. While we have seen some great progress with a decrease in Malaria infection rate between 2010 and 2015 of 21% and a decrease in the mortality rate of 29% we have a long way to go. Almost Half the population of the world is at risk from Malaria, and in 2015 an estimated 429,000 people died from Malaria. That’s the whole population of Miami dining every year.
More than 2/3 of the deaths that occur in children under the age of 5 and pregnant women are really susceptible – that’s a double hit on vulnerable populations.
The lifecycle encompasses the mosquito as carriers and transmission to humans. This is a great graphic summarizing the
Prevention and Treatment
The basis of prevention and treatment is tied to 3 basic methods
- Insecticides and Mosquito Nets
- Indoor spraying of insecticides
- Preventative Therapies for pregnant women, children and infants in Africa
The good news is that advances in Digital Health and mobile technologies that are bringing testing capabilities to many remote and underserved areas. Testing rates of suspected malaria cases have increased from 40% in 2010 to 76% in 2015 much of it due to rapid testing capabilities that economical and are increasingly available.
Sadly despite the progress, some of the mainstays of prevention and treatment are being impacted by the emergence of insecticide and drug resistance that has seen 60 countries reporting resistance to at least one of the 4 classes of insecticides and even more troubling 5 countries have reported drug resistance to the core compound used in antimalarials artemisinin
The report card by country is a mixed bag with some progress and success but increases in incidence in other areas
Many organizations have been working hard in this area and that includes the work by the Bill and Melinda Gates foundation has been focusing for many years on a World free of Malaria. They have invested over $2 Billion in grants spread across multiple areas prevention, mitigation and treatment.
Its a tricky virus that uses all sorts of clever subterfuge to fooling our bodies and the other carriers into ignoring the infection. There is even a clever “bending” of the red cell wall to allow the virus to enter more easily as demonstrated at Imperial College – Malaria parasites soften our cells’ defenses in order to invade:
However, now researchers led by a team at Imperial College London have found that the parasites also change the properties of red cells in a way that helps them achieve cell entry. The results are published in Proceedings of the National Academy of Sciences.
There are many fronts open and Papua New Guinea are one of the countries that dare to hope with encouraging progress that may bring about the end to the disease
In PNG, control measures – in particular the rollout of long-lasting, insecticide-treated bed nets – have resulted in the prevalence of malaria declining by more than 80% across the country since 2009. Cases reported at four sentinel sites have dropped from 205 to 48 per 1,000, surpassing all expectations.
New Strategies in Treatment of Malaria
There has been a lot of work on Vaccines for Malaria and it would appear some successful studies including this one from Germany
University of Tübingen researchers in collaboration with the biotech company Sanaria Inc. have demonstrated in a clinical trial that a new vaccine for malaria called Sanaria® PfSPZ-CVac has been up to 100 percent effective when assessed at 10 weeks after the last dose of vaccine.
So perhaps like Dengue – it may be “The Beginning of the End”. Let’s not let up – this is a major killer. Even with prevention and mitigation therapy as expatriates living overseas in Malaria ridden areas my mother still contracted the disease. We have had a global eradication program in action since the 1950’s – with advancement in science and understanding perhaps we are finally on the cusp of eradication?
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:
— UPS (@UPS) April 9, 2017
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.
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?
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
“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
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.
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.
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