Benefits of online patient communities

http://www.mhimss.org/blog/5-benefits-online-patient-communities

We are on a hot topic: "Nothing will be as powerful as a patient-powered data liberation movement".

After reading a tweet from the Harvard Med Schooland the corresponding link where Prof. Isaac Kohane discusses the potential of surveillance and patient-powered data, I get more and more convinced that the time has arrived for a revolution in the approach to the use and safeguard of medical records.

In his article, Prof. Kohane estates that the the "vast majority of your health care data remains unused, discarded and ignored" and I would add that this data is scattered, if not lost, among multiple providers.

Even in those cases where a significant amount of data is digitally stored, this data sits idle when it's been shown than it could be applied today to improve the delivery of health care to individuals and  to the advance of medical science.

But if the technology is mature enough to enable the analysis of such massive data and it has been proved that  keeping an eye on health care records could help in so many ways, what’s preventing us from such endevour?

Privacy is probably the main concern? I'm sure a properly protected database is at as safe as the safest  room where physical documentes have been to date  under custody at hospitals. The point is in the digital realm, once the back door opens tons of data can be taken effortlessly and this is a real risk.

Imagine we could solve the safeguard of data.  Even then,  not everyone would agree in letting a third party to  use his personal records to advance biomedical care and science. Therefore individuals have to be able to opt out or opt in, and in the latter case to select and isolate pieces of data he wants to exclude from the scientific scrutiny. 

In a practical system, where inviolable protection is difficult to guarantee ( otherwise there would be less leaks in the intelligence services )  informed consent for data-sharing would be needed and it should be madecrystal clear what the risks are of accidental or malicious disclosure and also  substantial legal penalties for anyone abusing your data.

However, I fully agree with  Prof. Kohane that, unbelievably "Perhaps a bigger obstacle than privacy is the parochial attitude that treats patient data as belonging to particular institutions, from hospitals to health insurers to vendors of health care information systems". 

As patients we have the right to get a  copy of our own data, but the reality is that in general this right is not reinforced  healthproviders with policies of their own. And sometimes the best we can get is a printed hard copy of the original record.

  

The sad outcome is that due to fragmentation, inproper labelling or storage, information of unfathomable value is being lost and this is something our society cannot afford.

Many things are required to revert this situation: 
• Political support is needed for public policies to promote and enable  sharing  our data for research and analysis with appropriate security measures.
• Actors in the Healthcare industry have to understand this is a win-win situation.
• Citizens have to understand the great benefit of opting in versus being out.

Standarized open and safe access to personal data : a win-win scenario 

Too much noise on the web...but not enough music

Post of a tweet by Alejandra Fernández (@ALFEAL)
 Caregivers are top digital health users, but only 59 percent find online tools helpful 

 

Tweet on the use of genetic data

Accenture (@Accenture) twitteó a las 10:00 AM on mar, jun 18, 2013: Personalized Medicine uses genetic traits to identify and treat disease. What does this mean for future #healthcare? http://t.co/1unv1ceeas

Interesting tweet on healthcare costs

MarketWatch (@MarketWatch) twitteó a las 6:27 AM on mar, jun 18, 2013: Health-care costs being contained for at least another year, study says http://t.co/NwM9SAywCL

The cost of knowledge

I am impressed that such a famous film star could become the flagship of our idea!

The thing is that the number of breast cancer checks at a major London hospital has doubled since our star revealed she had undergone a preventative double mastectomy. Apparently a very radical decision, some might think.

  Double mastectomy and reconstruction is an option that many women consider, as it drastically reduces the risk of brest cancer, but we should neve forget  the psychological, social and physical impact of this surgery.

On the other hand, if you want to get tested for a mutation on your BRCA-1 or BRCA-2 genes, it is not cheap but affordable to many in the developed world .
The question arises, what will we do when mutation testing on the DNA become feasible and affordable ??

Oeh oeh oeh

Yes!

This post is not a about the famous (at least among childs) explorer Dora, but confirmation that  the project behind this blog known as HealthBox has been selected by the Madrid-MIT M+Visión Consortium, a partnership of the regional government of Madrid and the Massachusetts Institute of Technology (MIT), as finalist for its innovation mentorship program: IDEA² Madrid.

This program  awards individuals and teams living or working in the Madrid (Spain)  who outlined promising new biomedical technology concepts with expert guidance and support to develop their ideas into full-fledged projects, and, potentially, new business ventures.

The Madrid-MIT M+Visión Consortium is a partnership of leaders in science, medicine, engineering, business, and the public sector dedicated to strengthening Madrid’s position as a global center of biomedical research by accelerating innovation in biomedical imaging, promoting translational research, and encouraging entrepreneurship.



This is a great oportunity to turn an idea into a paradigm shift in the relationship between the patient and healthcare providers...and it is now our turn to show that ,' yes, we can!' 

Standards Calendar

Google has an open and crowd- sourced  Calendar for Healthcare Standards Event calendar
This calendar tell us about  big meetings, usually two-five day events related to Healthcare Standardization around the world. 

Note that DICOM maintains a more detailed calendar, as does IHE

The e-mail address for this calendar is: 9h5apktq1vvr82k0ogvunvdsvo@group.calendar.google.com

Google's No Bellwether for Healthcare Cloud Services

Carlos has just pointed out this link. The author is convinced that Google's lackluster attempts to convince individuals or institutions to relinquish their health records should not discourage the healthcare industry from looking elsewhere for cloud services. Google's failure to "scale" its Health program could be caused by the the resistance among healthcare providers (and patients) to Web/cloud-based healthcare services because of security and privacy concerns. In my opinion, this is probably not the main argument for the failure: security and privacy is also an important concern in banking and the sucess in ebanking is out of question. That's why I share the author's view that main problem is that Google couldn't convince enough healthcare providers and end-users to sign up for its service because it could not convince them that it fully understood how to improve the quality of healthcare beyond reengineering some of its primitive recordkeeping systems. And this is a lesson to learn: the healthcare is complexly interrwined and without a deep industry domain expertise or experience, it will be difficult to convince users, be it individuals or institutions, to relinquish their health records to an untested vendor that offered little more than a generic set of commoditized cloud services.

HealthBox: A cloud platform to protect, share and analyze your personal medical data

This is our new project in the field of medical imaging technology. We have submitted our idea to the IDEA² Madrid, a program of the Madrid-MIT M+Visión Consortium, for evaluation and hopefully we get support to refine the project ideas and get the guidance and expertise to get it done.