Connected Health

Interesting keynote from mHealth Summit on the perils and potential for connected health (mHealth to some).

Connected health (through mobile devices) has the potential to allow individuals to take control and improve their health.  However, there are powerful forces which have the potential to prevent this as they co-opt these powerful tools into their existing health care delivery paradigm, thus preventing individuals from realizing the benefits.

Are we about to make the same mistake again?

December 02, 2012
Robert B. McCray, President and CEO, Wireless-Life Sciences Alliance

For the past 50 years, lives have been extended in industrialized societies, but in the past 20 years rates of obesity and certain chronic diseases have skyrocketed in rich and poor countries. The prime culprit seems to be behavior-driven damage to our own bodies. Starting with the discovery of antibiotics, vaccines and antivirals, medical technology has saved millions of lives. Too many of us have a mindset that technology will save us from the consequences of our own behavior. This assumption threatens our lives, our pocketbooks and our social contract.

The physician community is full of wonderful individuals, many of whom have devoted all or portions of their careers to improving the health of populations in need. As a medical industry, though, the profession has promulgated the notion that the physician-patient relationship is nearly sacred and that virtually no other individual or entity should be able to monitor or manage the physician’s actions. Key institutions representing doctors and other providers have devoted most of their efforts to protecting the prerogatives and enhancing the incomes of their members. The medical industry has claimed intellectual leadership for healthcare, but the system it has built is failing to serve most of the world’s population, and it's getting further behind the growth of human need and medical knowledge. New technologies have saved many lives but have not addressed the large-scale shortage of services in most of the world, nor has it maximized population health benefits in the rich world.

mHealth offers the promise of saving this situation, but we cannot leave it to the medical establishment to lead this change. We as citizens and consumers, not as patients, must step up individually and via the institutions that we control to take charge of our own health and to set the expectations for the institutions that deliver healthcare and health supportive services.

(A note on the terminology: The term “mHealth” is used out of deference to the mHealth Summit sponsor, though I believe it is too limiting – this is about much more than mobility – and is being overwhelmed by thousands of "mHealth apps" on the market that are developed without grounding in science and for which totally unsubstantiated claims are made. I prefer “connected health” as the term that best describes the value of the convergence of technology and healthcare, including mobile communications infrastructure, digitized information, big data, cloud-based systems and behavioral economics.)

Blame can certainly be allocated, but most pertinent is Pogo’s observation at the dawn of the environmental movement in 1970: “We have met the enemy and he is us.” Our twin enemies are transaction-based medicine and inertia (personal and institutional). Residents of rich countries like the United States have adopted lifestyles that are destructive, and they have ceded responsibility for fixing their health to institutions paid by third parties. Neither the individual nor the provider has responsibility for outcomes in this model, though the patient, his or her family and fellow taxpayers certainly suffer the consequences.

Consumer-directed health (not just healthcare) can save this situation. The tools of “mHealth” include access to all the knowledge that is needed to reduce the need for healthcare and to select the best healthcare approach when it's necessary. As a movement, we can also reset public and private priorities so that they are supportive of healthier communities. We can also demand transparency in healthcare so that financial sponsors of services, be they individuals, employers or governments, can make informed choices about their expenditures and hold service providers accountable for outcomes.

So what is the role of physicians and the medical community in this effort? Individual physicians are in a unique position to improve our world. They retain the confidence of the public and have the power of both persuasion and the pen. Specifically, physicians can take an interest in improving the health of their patients, rather than just caring for their diseases, and “prescribe” healthier living habits by directly addressing the harmful lifestyle choices that their patients present. These approaches are being institutionalized by practices ranging from the largest (e.g. Permanente Medical Group) to individual practitioners. As a politically influential industry, the medical community could become a major force for positive change. This is unlikely, given the pending disruption to the medical businesses of those who have succeeded in transactional medicine.

The mistake citizens and consumers must avoid is to assume that someone else will take care of the problem. We must embrace the responsibility and demand the tools that are needed to discharge it. This is not easy. It is difficult to change personal habits and the public’s mindset about health and healthcare. Entrenched bureaucracies, professions and institutions will continue to fight to maintain their positions. While difficult, technology and the knowledge that it's creating make it possible to identify and implement the changes that are necessary to achieve my goals of improving life and creating wealth globally.

Rob McCray is the president and CEO of WLSA, a member association (http://www.wirelesslifesciences.org/). The mission of the WLSA is to remove the barriers described in this essay, and we will do so by continuing to bring together the most committed organizations and thought leaders from all sectors of the community.  Please contact us if your share our goals.

Disease Burden Study

A recent question came up:  "What is the best way to conduct a chronic disease burden study?"

Interesting question.
You want to measure the burden of chronic disease.

First, the data.  If you can find good quality data that already exists, this will greatly simplify things... however, in most cases, you will not have access to good quality data.
Good data will be comprehensive (cover the entire population or a representative sample), reasonably current, accurate, and have sufficient detail.  It will need to be collected at the individual person level.

Some possible sources of data:
Surveys:
- If there is a recent DHS (Demographic and Health Survey) this might have enough detail on chronic diseases.  Most DHS data is of good quality.  However, you might not have access to a recent DHS since they are usually only done at intervals of 5 to 10 years.
- Other organizations may have done health surveys and may give you access to their data.  You will have to canvass government, NGOs, and aid agencies.

Routine data:
Some routinely collected data such as that from health facilities can be useful if it has detail on chronic diseases.  However, there are several problems with routine data.  It may not cover the entire population.  There is usually no way to track individual patients to come up with a person count as opposed to a visit count.  There may be other distortions in the data due to poor recording or patient selection.  If you can find routine data that covers the population comprehensively, there are ways to adjust for multiple visits.  However, you still may miss people who don't visit the facilities.  If there are community outreach workers, they may have data which will give better coverage.

Collect your own data:
You will probably be faced with the task of collecting your own data if you can't find existing good quality data.  You will need to do a survey and it does not need to be a large survey if you choose your sample carefully.  A small representative sample can give good quality results.  The sample should be chosen to be representative of all components of the population, age, sex, location (urban, rural), socioeconomic, etc.  A good place to start is the national statistics or census office who often can help you with designing a representative sample.  You should design a questionnaire which is as short as possible and tightly focused on the diseases of interest.  Consider using biomarkers (measure such things as blood pressure and blood tests) if you have the budget.  Here again, community health workers may be a good resource to assist with the survey. 

I assume that you will be using one of the common methods to calculate disease burden such as DALY (Disability Adjusted Life Years).  DALY results in a number which measures the impact of disease by taking into the degree of disability for a disease as well as mortality.  It is also discounted for future years of loss which is appropriate since the society has the opportunity to compensate for this loss.  The DALY is the most useful number for planners to use when deciding on allocating resources if they take into account the cost to prevent and cost to treat each disease.

Hospital Coding - The ICD Conundrum

We Need Good Hospital Data

Developing countries need timely, accurate data on patients admitted to the hospital so that they can understand the hospital demand and patient problems and use this data for planning and management as well as improving clinical care.
How can we get good hospital data?

The ICD Problem

The WHO ICD coding system is a magnificently comprehensive nomenclature for precisely specifying any disease or condition for any patient.  The ICD-9 contains about 15,000 codes and ICD-10 expands that to about 90,000 codes.  It is used extensively in the US and other developed countries to code hospital and clinic visits for reimbursement, patient care and research.
WHO would also like it to be used in developing countries and has been sponsoring training sessions for years.  These sessions typically take a few weeks and give coders a basic understanding of the system. 
I have seen the data produced by these coders in many developing countries and I have never found any data that could be used for planning or management.  In some cases the quality of the coding is reasonably good but it covers on a very small (unrepresentative) set of patients and is months to years late.  In other cases it is just very poor quality (and also usually very late).

A Proposed Solution

We are considering this problem now in the country where I am currently working.  They currently have no data from hospitals.  WHO has trained about 20 coders but none of them are doing any coding since they don't feel competent to do ICD coding and they have been assigned other tasks. There are 19 hospitals but the coders (who have not drifted away) are all concentrated at the national referral hospital.
We need a coding system which can be used effectively with minimal training and which gives timely and reliable information about patients in the hospitals.
I took a look at the DRG coding system and decided that this could be used as a starting point for a simplified hospital coding system.  The DRG codes were designed for hospital reimbursement and they lump a large number of diagnoses codes into less than 1000 different codes which are assigned a "length of stay (LOS)" and reimbursement factor.
I went through these codes and simplified them further.  For the most part, I eliminated the codes which accounted for severity and complications subsets  of the basic disease category.
For instance, most of the codes appear as a set "with co-morbidity and complications" and without.  These distinctions are important for reimbursement but not for basic hospital data.  To keep the coding simple within the expected capabilities and training available in developing countries, these were consolidated.  They can be added back as coding skill improves.
I ended up with a list of less than 300 codes which are comprehensive of the expected hospital admissions in developing countries.
It is also much easier to code using this limited set.

Example

Here is the simplified set of codes for the Respiratory System:
Surg    Major Chest Procedures  
Surg    Other Resp System O.R. Procedures  
   
Med    Pulmonary Embolism  
Med    Respiratory Infections & Inflammations  
Med    Respiratory Neoplasms  
Med    Major Chest Trauma  
Med    Pleural Effusion  
Med    Pulmonary Edema & Respiratory Failure
Med    Chronic Obstructive Pulmonary Disease  
Med    Simple Pneumonia & Pleurisy  
Med    Interstitial Lung Disease  
Med    Pneumothorax  
Med    Bronchitis & Asthma  
Med    Respiratory Signs & Symptoms
Med    Other Respiratory System Diagnoses  
Med    Tuberculosis

The steps in coding a hospital admission would be simplified to:
1. Determine the organ system (i.e. cardiovascular, pulmonary, GI tract, etc.) (There are 25 of these in the code set.)
2. Determine if it was a medical or surgical admission (Was a procedure performed?)
3. Choose from the options within that group (there are between 3 and 15 options at this point).

This would greatly simplify the coding.  It would also give very useful information about hospital use and patient conditions.  Over time as the coders become more experienced and trained, the ICD codes could be introduced for the more capable coders.

For example, if a patient was admitted with "pneumonia" the coding process would be:
1. Determine organ system: Respiratory System (Set 4)
2. Medical or Surgical: Medical (no procedure performed)
3. Then choose from the (14) codes in this set: "Respiratory Infections and Inflammations" (code 179)

This is much easier that performing a full ICD code determination and it should be possible to train the coders to do this much more quickly than ICD coding.  The experience with this coding will also help start them on the path to ICD coding which will require much more extensive training.  I think that this DRG derived coding is a good first step (crawling) before ICD coding (walking).

The Codes

If your are interested in the details. I have uploaded my spreadsheet which contains the full DRG code set as well as the simplified codes.

I'd appreciate comments from anyone.

 

DRG Derived Codes 

IT Solutions - Development and Sustainability – What is your goal and what is the best use of resources?

IT Solutions

Because the currently available IT skills, electrical power and connectivity in many developing countries falls short of those necessary to set up and maintain the data centers for web based applications, external assistance will probably be required for some years. Fortunately, there are skilled international groups who are willing and able to perform these services and the software, being web cloud based, is easy to administer remotely when installed in a reliable data center. (This is in stark contrast to the difficulty of administering software which must be installed and maintained on local computers at each site.)

Because of this situation of limited resources and skills, a solution is required which will make the best use of resources. This means focusing on the goal and determining the best way to achieve the goal. The goal of the health information system is to improve the operation of the health ministry by providing timely, accurate data about health status and health facilities.  The issue is how to best implement this information system at least cost and greatest efficiency in the low resource and skills environment. An information system can be thought of as having three areas. First, there is the requirement for connectivity, second, there is the information system hardware and software, finally there is the output of the information system which is high level analysis leading to use of the data for decision making. The goal is not the information system itself, it is the use of the data to make decisions. We need to make it as easy as possible to implement the information system so we can get to the goal of useful data.

Developing countries with weak IT capacity are best served by focusing their limited resources on two areas. These are the bottom layer of basic connectivity and the top layer of data use:

- Maintaining the basic Internet network functionality

- Developing higher level data analysis and use skills

The “middle part” is the set up and administration of the data centers. This is the level between basic network functionality and high level data use. This level requires specialized technical skills and equipment. It is difficult to set up and maintain these data centers, especially in resource poor countries. This is why it is best left to international organizations who are experts in the software maintenance and to Internet cloud data center providers who are experts in supplying computing resources over the Internet.

Some people are concerned that farming out this function will deprive the local economy of the development opportunity to create their own data centers and the skills involved in running them. This is a worthy goal in its own right but it is not a core objective or function of the ministry of health which has a goal of improving the delivery of health services and it needs data in order to do that. Setting up a data center is not the goal. Access to timely accurate information is the goal. If the ministry can get more reliable and less expensive access to its data using a rented international data center, then that is the course to pursue.

A good analogy is the situation with cars and roads. Most developing countries are dependent on large industrial countries to supply cars. However, there is local capacity to maintain roads and also to repair cars. The local population have been trained in the use of cars and can use them to get wherever the roads allow. The same situation applies to the use of computers and the Internet. Computers are the cars and the Internet is the road. Developing countries are also dependent on large industrial economies for the supply of computers. However, there is local capacity to maintain the Internet and to repair computers. Just as with roads, the Internet is better in some places than others and there are places the Internet does not reach. The effort should be to improve the Internet speed and availability to all areas of the country. Internet technology is the most basic technology and the most useful. Once it exists, then computers become useful.

What about Internet cloud data centers? These require specialized technology and skills which take time to develop and are very expensive to do properly. Just as with cars and computer hardware, this is something that is best left to large industrial economies who are happy to provide data center services. No one is concerned that the developing countries do not have the ability to manufacture cars or computers and no one should be concerned that they do not have the ability to build and maintain data centers. Even in large industrial economies where you have good resources and high skill levels, many companies do not build and maintain data centers. They outsource this function to cloud service providers who have the specialized skills and equipment to ensure reliable, efficient service. The Solomon Islands should take advantage of these international Internet cloud facilities just as they take advantage of the large industrial country car and computer manufacturing facilities.

There is an additional advantage of using large data centers and that is that you can “rent” the facility as a service and you don't have to buy it. You can rent the capacity you need for the time you need it and you do not have to make the large investment in equipment, connectivity, and training which is required to have these function reliably and efficiently. You don't have to worry about equipment breaking or becoming obsolete or backing up the data. The data center provides these services cheaply and reliably since they spread the cost over a large number of customers. A first class data center costs many millions of dollars to set up and operate and requires highly specialized technical skills.  It makes sense to rent the capacity that you do need for the time that you need it and not have to bear the entire resource cost of the data center. Just as with a car, it is often more economical and reliable to just rent it when you need it rather than having the expense of owning and maintaining it full time.

It is most important that government efforts be focused on these two areas. First, maintaining the Internet (roads) as basic infrastructure and then at the high end helping the ministry to develop the skills of data analysis and use to improve services. You don't need to know how to manufacture a car to use it to get somewhere. You just need to know how to drive it. Similarly, the ministry should focus on learning to “drive” their data and use it to improve health. Building a data center is an unnecessary diversion of attention and resources when you can easily buy these services. A data center is a tool like a car or a computer. You don't make tools when you can buy them cheaply.

When your goal is to deliver vaccine to a village, you don't start by building a car factory. You just go out and rent a car.