We are not at a point where we can effectively: total, safely protect, easily transport and access our health data. I read a great article by Margalit Gur-Arie entitled, “Trust your life records to an unnamed chain of software vendors” she uses an analogy of our current banking system to emphasize how far away we are from gaining the trust around our health records data. Great article and highly recommended. This got me thinking about how we manage our data today?
The current focus on the use of smartphones and tablets are mainly for the physicians and nurses. We have yet to discuss the needs of the patients? My personal experience in daily work routines, writing my blogs and using smartphones indicates we are still evolving. There are some models of storing data that could promote greater adoption of data management that would help accelerate the use of technology for managing healthcare data.
A few weeks ago I had accidentally dropped my laptop. You know those moments when you’re traveling for business and just happened to let your device slip from your hands. This damaged the LCD display rendering my laptop useless as I was not able to use my data. For the next week I struggled to work effectively, and yes I do keep up a back-up of my data. So I had to cart around my portable drive with my files to a desktop with Internet access, and rely more heavily on my smartphone.
Bottom line from this experience is that smartphones are still not the answer to managing my data. I still rely on apps to do my daily work routines. There needs to be alternatives to managing apps and data across several devices.
Managing your health records
My brother is a kidney transplant recipient. In my earlier blog “Fresh start in 2011” I mentioned how thankful I am for his life. Those of you that have a relative who has undergone these kinds of operations you know that there is a daily regimen of medications to keep the body from rejecting the foreign organ. Have you seen the amount of ‘paper’ data from all the specialists and physicians it takes to keep this all in balance? Even with a dedicated intern whose job it is to check and analyze this data still takes a few hours just to make a ‘minor’ medication adjustment!
There are some apps on the market that address specific medical data: heart monitoring, diabetes tracking, etc. I would be very interested in a personal health record (PHR) that can sum the data from multiple sources?
Smartphones and Tablets – we’re still developing
iPhone versus Android. The iPad versus the latest set of tablets. Earlier this week I posed several questions at the 2011 mHealth Trends (HIMSS Preview) webinar with Brian Dolan (@mobilehealth) and John Moore (@john_chilmark). These devices are still evolving in the market and while it is getting easier to check health data via individual apps we are not addressing the issue of managing the complete portfolio (or checkbook) of your health data?
Later this year the iPhone 5 will be out on the market. As well as an update to the popular iPad tablet. The market is evolving with devices that are easier to use and much more powerful. We have come a long way since the bag phone and netbooks.
How can we digest all of these changes – what is still missing?
There are ways to manage your data on multiple devices. Mobileme (www.apple.com/mobileme/) from Apple is a good example of how their devices can have data synched via the Internet for email, contacts and files. There are apps like SimpleNote (www.simplenoteapp.com) that allows you to support ideas using any smartphone and allow you to reach these ideas, in my case, via the laptop. The idea is that with a little effort I can avoid the unintended consequences of the loss on one device leveraging cloud computing as the repository for my data.
We are still not there when it comes to health records. Since the sources of the data come from a variety of sources. Physicians will soon be using electronic health records. Now the challenge will be how do patients aggregate this data? Can’t say I have a good answer for this based on some of the personal health records I’ve tested.
I would be interested if someone has found a ‘true’ personal health record that can be maintained on multiple devices and allow me to summarize my results data. Once this is in place we can then address the issues of security and portability. In the meantime my daily work is in helping Life Sciences companies’ leverage how an individual can use, analyze and get this data via a variety of devices. I am optimistic that we will see a day when software vendors in the healthcare space act like banks and financial institutes. Though I can’t see how the ATMs fit in all this…..who knows?
Online webinar was held on March 25, 2010.
As I was preparing to attend this call I remembered an article that appeared in Pharmaceutical Executive by Emmanuel Le Poul (November 18, 2009) entitled: “Rising to the Challenge in R&D.” So while the country was in the midst of discussing healthcare, the article started off by describing, that the pharmaceutical industry has not been able to improve the number of new molecule entities (NMEs) approved by the FDA. With the debate on healthcare focused solely on costs. The bigger issue is around productivity and innovation and why is it that we have not been able to improve the success rate for new NMEs? Many of you are well aware of the billions of dollars invested and countless clinical trials being performed each year. Is there a better model for drug development?
I had expected this webinar to focus on the ‘science’ aspects of drug development. Instead the focus was on improving the ‘process’ and for me that was truly enlightening. The presentation highlighted the growing ‘disconnect’ between academia and the pharmaceutical industry. We are well aware of the pending patent issues within the industry. The investment costs of $50 billion per year being spent on R&D, and the lack of ROI in terms of new products. The speakers covered the history for how we got to this point, and introduced the Accelerated Research Collaboration (ARC) model developed by the Myelin Repair Foundation (MRF). http://www.myelinrepair.org/research_model/
The ARC model is a holistic approach that spans the entire drug discovery and development value chain. This offers Pharma the means to make decisions when to license the discovery. I see it as improving the odds for success by closing the gap shown in the graphic on the right.
I’ll summarize the model as follows:
- The first step is target discovery. This is the basic science conducted in university laboratories. For the most part, the NIH and other disease research organizations simply fund basic science that results in the publication of results in peer review journals. The result is hundreds of thousands of such articles published each year. The ARC model identifies the best scientists, requires them to share data in real time, manages the scientific process to a strategic research plan designed to discover therapeutically relevant targets, and then file patent applications on their discoveries.
- The second link in the value chain is target validation. The ARC model establishes and manages a network of contract research organizations, better known as CROs, tasked with validating the basic science from the MRF labs to industry standards.
- The third step in crossing “the valley of death” is drug discovery. The ARC model identifies and engages commercial partners to conduct drug discovery research. The MRF accomplishes this step in the process by entering into partnerships with multiple pharmaceutical partners, each established to move multiple targets through drug discovery and clinical trials.
The sports equivalent of the ARC model is to achieve as many shots on goal as possible, and thus overcome the high attrition rates inherent in getting a treatment approved and available to patients. An essential component of the ARC model is coordinating and being involved with all the players and participants in the value chain, from the academics, other non-profits, patients, physicians and various government agencies, like the NIH and the FDA. The MRF invests and is involved in every step of the process.
If better treatments can be found using this model then we will have achieved success. We have spent too much attention on the cost of healthcare rather than focusing on the patient and developing new treatments through process innovations like the ARC model. I would recommend visiting their site to learn more about this model and the success they have had so far.
For more information on the webinar including the transcripts and slides these can be found on: http://myelinrepair.org/myelincures/
Given all the news about the healthcare reform bill and Thanksgiving (a US national holiday) I read this article which appeared in the Wall Street Journal (24Nov2009) by Melinda Beck “20 Advances to Be Thankful For” and a blog posted on: scientificblogging, science 2.0 by Becky Jungbauer. Thanksgiving is always a time for families to gather and share a common meal. Unlike other holidays, this one always has special meaning for me and each year brings new stories and changes in our family member’s lives. What struck me about this list of scientific advances is that we do have a lot to be grateful for I’ve chosen the following as it has direct impact on me and my family:
- 62% of all US adults are in excellent or very good health
- Life expectancy in the US reached an all time high of 77.9 in 2007
- Death rates from cancer dropped 16% from 1990 to 2006 (this is the second leading cause of death – the first is coronary heart disease)
- Deaths from strokes dropped 26% from 1995 to 2005
- Average total cholesterol (in adults aged 20 to 74) dropped from 197 milligrams per deciliter in 2008 from 222 in 1962
The author, Melinda Beck, goes on to state, “The longer you live, the happier you are likely to be. Many older adults find that happiness and emotional well-being improve with time; they learn to avoid or limit stressful situations and are less likely to let negative comments or criticism bother them than young adults, according to research presented at the American Psychological Association conference in Toronto this year.”
I do agree with the article that goes on to share simple “free” tips on taking care of you: getting enough sleep leads to thinking more clearly, helps with weight loss, and fends off infections. Going out and getting at least 30 minutes of sun will give you more vitamin D. Yet there is still more that we need to do to improve health care in this country and around the world. I look forward to seeing Personalized Medicine (targeted treatments) for cancer, new drugs for lupus and memory loss, advances in vaccines for gene therapy and cancer, which leads us to a promising future.
Take a moment and read through the entire article. You may find some reason to be thankful for as health care impacts all of us. Find time to focus on your family and avoid the stress of the job search. Recharge yourself and come back renewed that an opportunity is just around the corner. Yes, by now you can see that I am more than just an optimist. Please do enjoy your holiday.