In a recent European Court ruling Search engines such as Google have been ordered to enable "the right to be forgotten". Basically if you have any information on the internet that you are embarrased or incriminated by you can request that Google remove the links to the information so it is not easily found in searches. The information itself is still there but it is not as easy to find.
It seems 12,000 people put requests in with Google on the first day and in a Facebook post, EU Justice Commissioner Viviane Reding stated that the ruling was a "clear victory for the protection of personal data for Europeans."
I fail to see how this is the case. What the EU has in fact done is put even more power in Google hands since they are now being asked to be the arbiter of if you have the right to be forgotten or not. Google has already launched a service to allow Europeans to ask for personnel data to be removed from online search results. In a statement Google said it would "balance privacy rights of the individual with the publics right to know and distribute information." Why are the European Court putting this determination in the hands of Google?
In the 1995 movie The Net, Sandra Bullock plays a computer programmer who has her records erased from existence and given a new identity, one with a police record. The resulting movie is full of intrigue and espionage, but of course today all the criminals would have had to do to erase her identity, was fill in a form and send it to Google. It would have made for a pretty boring movie.
There are legitimate reasons why there needs to be a process where erroneous or needlessly damaging information should be "Forgotten". Putting that decision in the hands of a search provider is not the right path though. It is both putting the power to determine legitimacy in the wrong hands and it is the equivalent of a Fahrenheit 451 book burning policy on information that others may truly find legitimate. If a newspaper publishes erroneous information about you you can sue them for libel or simply request they print a retraction. If the information is true or false it remains part of historical record forever. You can not request every copy of the paper is found and burned or that microfische companies need to blank out your information.
The Internet is actually more "forgetful" than traditional media. Information can be deleted, albeit with difficulty. The courts however need to take responsibility for who owns decisions about information ans it's legitimacy and it should not be public corporations.
Update July 7 2014.
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Since I originally posted this Blog, Google has been taking requests and "Forgetting" information on the web. This has of course highlighted why it is not a good idea to put this decision in the hands of Google. Dave Lee of the BBC posted this article about how google had been forced to 'Unforget' information that was originally postred by the BBC and the Guardian newspaper after complaints when Google 'forgot' it.
For Google part they say they did not want this ruling, but now after being placed at the center of it by the European Court ruling they are trying to comply as best they can. This story will no doubt go on and on.
Technology is changing every aspect of our lives, and one area rich in technology innovation is healthcare and the battle against our most feared diseases like cancer.
I was very interested in a few groundbreaking research developments I have seen in the last few weeks about cancer. The first was under the attention grabbing headline "Girl whose cancer was cured by HIV." What! AIDS vs. cancer. That sounds a bit like Predator vs. Alien. In fact it is an amazing story about how HIV may be modified to attack cancer cells.
The second was around epigenetics and developing personalized cancer treatment. This involves looking at the specific DNA of a patient and determining the right drug combination for their specific case. The computational power required is one of the key reasons why this is not yet a broad treatment possibility for cancer patients. If ever the term "Big Data" was apt, it is here. Maybe it should be "Big C Data"!
The third story was about using electronic noses to identify cancer in its early stages. Early detection is one of the best ways of improving the outcome for cancer patients and it has long been thought that some animals can actually smell cancer. Scientists are exploring this to create better early detection mechanisms.
Just 40 years ago cancer was a disease rarely spoken about. It was the Big C. The disease that shall not be named. A lot has changed in 40 years. Now we have comedy shows on HBO about cancer, "The Big C", a movie comedy about cancer, "50:50" and hardly anyone does not know someone who is fighting cancer or has passed because of cancer. There is even a game for your cell phone called Triton, where the aim is to thwart cancer and proceeds go to cancer research. I venture to suggest that almost everyone who reads this blog has volunteered for a charity walk for cancer or provided support for a cancer charity in some other way. We even have slogans like "Save the Tatas."
Some of the areas where technology is helping fight cancer are obvious such as new technology that helps detect and treat cancer, or fueling groundbreaking research to achieve breakthrough new treatments, or sites like WebMD that offer advice that may help patients spot the early warning signs. However, maybe the biggest tool in the arsenal against cancer is social media.
Most people have probably looked at social media sites to understand an illness at some point, and come away wishing they had not. This is because like any application of social media, you have to take the good with the bad. There are always horror stories out there on the internet. However I believe the good far outweighs the bad. Let's look at how social media can impact a patient with cancer. I should mention here that every cancer situation and patient is different, and whatever path they choose is the right one for them.
A cancer diagnosis is a terrible thing to have to hear and in the aftermath of being told you have cancer you have to decide who you are going to tell and how. Close friends and family are probably going to get told face to face or via the phone, but what about everyone else? Here is the first way in which social media helps:
You can use social media to inform all your acquaintances that you have been diagnosed with cancer in a single post. Facebook can be a key tool here. This may seem a little cold to some people but the alternative is often distressing. It may not be for everybody but cancer is a life changing event like getting married or having a baby, and how many people do we know who have chosen to communicate those events broadly on Facebook.
Once you are undergoing treatment for cancer people are going to want to know how they can help and how you are progressing. It is easy to tell some folks but our friends may be half a world away and it is not going to be easy keeping them up to date if you have to do it individually. This is the second way in which social media can help:
Blogs and dedicated social media sites keep family and friends informed. If you are reasonably savvy you can start your own blog (Wordpress, Typepad etc.) about your cancer journey and have your friends sign up to recieve updates. For those less technically savvy there are simpler alternatives provided by sites such as CaringBridge or Lotsahelpinghands. CaringBridge connects people during health events. Currently I am following three friends Caringbridge Journals and it is an excellent way to globally inform anyone who is interested how you are coping. CaringBridge lives on donations from those using the site to keep the service going. Lotsahelpinghands offers support for both patient and caregiver and extends into volunteering in local community events.
Friends and family of cancer patients want to help and social media makes that possible in a number of ways.
Fundraising is made easier via donation sites. Sites like JustGiving, GiveForward, Youcaring and GoFundMe enable easy donations toward a charity or directly to a family or person in need. As an example my niece recently climbed Mt Kilimanjaro for Cancer Research UK and was able to use JustGiving to collect charitable donations from around the world and raise over $10,000. Some of these sites are designed to help get money to recognized charities, but many are more personal as they can be directed to a specific person in need.
Scheduling help is easier. Sites such as LotsaHelpingHands or more specialized sites like MealTrain also enable you to set up schedules to help patients by delivering meals etc. On Mealtrain you simply sign up for a meal time and what you're committing to, and the calendaring ensures that there is no overlap with others helping care for the patient. MealTrain also offers sample menus for different conditions.
Finding people with a similar diagnosis to discuss experiences with is easier. Many cancer patients feel alone with their diagnosis and would like to speak to people who have been through a similar experience.This is an area that can be a bit of a minefield on the internet but if you find the right sites it can me immeasurably helpful. Weather you just want to chat to someone going through a similar experience or look for information on your specific condition there are many sites available. Most medical sites offers chat rooms and most medical conditions typically have dedicated support groups. From a cancer perspective groups like the LiveStrong and Susan G. Komen get a lot of attention but if you have a rarer cancer with less funding and visibility you can use the specific support group for that cancer. A couple of examples are: ECAN -Esophageal Cancer, PANCAN - Pancreatic Cancer, Thyca - Thyroid Cancer.
All of these are helpful tools for the cancer patient and show how social media has become one of the greatest help tools of the last 10 years. However maybe the greatest impact of social media on cancer is visibility. The pace of innovation in cancer treatments is increasing but so are the costs. As more people see news about cancer and the people affected and discussion opens up, the more funding there is into research. And the more research there is the more incredible stories of scientific breakthroughs we hear, like those I started this blog with. Ultimately this pace of research will drive the big breakthroughs that help us detect cancer sooner and treat it more effectively, improving the quality of life for all cancer patients and their families.
Finally more oncologists and cancer researchers should understand the power of social media tools like twitter to get information and news out to patients. While some are it is still not a common practice. There is an excellent article about this by Dr. Michael A. Thompson, MD, PhD on The Cancer Network website and a more comprehensive guide from Dr. Thompson to social media and oncology is here.
Social Media is at the heart of driving these breakthroughs because it had made cancer a more open disease. As more and more patients, caregivers and medical personnel enbrace social media the pace of breakthroughs in cancer research and treatment will accelerate. As Martha Stewart would say, "That's a good thing!"
Some links on how social media has had an impact in the fight against Cancer:-
#nomakeupselfie - a viral message on facebook with women taking pictures of themselves with no makeup raised $12M in just 6 days for Cancer research UK.
Welcome to my blog. My name is Lee Johns and you can find me on twitter as @StorageOlogist. I have been in the technology industry in a variety of roles for 30 years.
I started my career at Compaq Computer in 1984, so I have been through the growth of the PC business, the advent of Industry Standard Servers the introduction of shared storage, and along the way have also been responsible for bringing to market printers and enterprise software. I have worked for some of the largest technology companies in the world, and also been involved with startups. My most recent role was as the VP of Product Management at Starboard Storage who just, (Jan 2014), sold their technology to SGI.
I also have a degree in Zoology and hence the title of my blog. You see I have found alot of parallels between the theory of Natural Selection (survival of the fittest), and the technology ecosystem in my time running business and marketing groups for technology companies. It applies broadly to a products chance of survival within a corporation, and within the broader market. After all we have all seen the Technology Dinosaurs wiped out by a change in the competitive landscape.
What is interesting is that the real Dinosaurs did not see the meteor coming. The Technology Dinosaurs almost always do. They just can't stop watching the meteor (Competitive Disruption), until it lands on them. My mission in any job I have been in is to make sure that I keep my eyes open, and as soon as I see anything that might be a meteor galvanize support to get out of its way, or mine it for precious metal. IT dollars are precious and you have to find your edge in getting inherently conservative buyers to hand them over.
So what can you expect from this blog? Well I hope to provoke thought. As simple as that. I will obviously be discussing things that happen in the industry but will also cover some things from outside technology which are relevant to the technology industry. Things that I find interesting and I hope you will too.
I am a consultant on the WTCNeed team. and you can find my profile here
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