With our ever increasingly networked world, where prompt access to our medical conditions could be a matter of life and death when emergency intervention is needed, there is the associated downside of unauthorised access to medical computer systems and devices - including implanted devices like defibrillators and infusion pumps. For most of us, our concern is most likely related to our status of having an incurable blood cancer becoming public and hence available to employers, business contacts and so on. Recently there has also been an increase in ransom-ware attacks, where access to medical records is denied to those providing medical care as was reported in Australia last month (see below). The Gold Coast Medical Centre involved went public, but how many businesses keep such events quiet?
What can you do personally?
1) Be mindful of what you divulge and to whom. (This naturally includes the information you enter in your Profile and in the Data Sharing settings for this site and other on-line forums.)
2) If you keep any records on your personal IT devices (computers, mobile phones, tablets, etc) consider encrypting your records and make sure your devices have effective security programs installed and kept up to date. Be very wary of what programs and apps you install - some of them install other programs by default which can report back information you may not want disclosed and many apps unnecessary gain access to personal information on your phone.
3) You may wish to get involved in raising security concerns with your government so that legislation is appropriate to the threat and public programs to put your medical records on line are appropriately governed and that effective security is enforced.
The above only lightly touches on the security risks associated with our increasingly networked world to encourage you to think about the risk/reward trade-offs. It is an old truism that the only secure computer is one that is locked away in a secure, shielded room with no network connections, no CD/DVD drives, no ports for plugging in flash drives, etc. Trouble is, that secure computer isn't much use...
Reminders about on-line security are always sound and I'm very much aware of the potential dangers and take measures to minimise risk.
Just a question your blog raises for me. We have encouraged members on here to give basic personal information in an attempt to ensure a more accurate response to questions and issues. As we know, age, gender, benefit systems and which country people receive their health care in can be highly pertinent. It also helps us to come to know each other as individuals as we share 'delicate and often painful information'.
I notice your point 1 urges caution on how much we divulge even on this site with regard to what we enter on the profile section and data sharing sections.
How do we reconcile these things? Presumably the private profile section is as safe as it can be (hackers will always find a way if they are determined).
The profile section does allow for location to be publicly withheld (however, even though I haven't entered my postcode to be visible, it can still tell me what distance other members live from me). Not sure if this is restricted to my access?
I just don't want security paranoia to prevent people from feeling safe in disclosing basic information which allows us to develop as a supportive community. Naturally this doesn't include bank details, specific names, employment addresses or any personal peculiarities (of which I'm sure we all have many!).
I do realise your blog is intended to cover much wider, real security issues in relation to health records but I just wanted to address it as it relates to this site.
You've raised some very pertinent points. Regarding my comments on what to share in the Profile and Data Sharing settings for this site, I raised them because we tend to enter information into these areas when we join a forum and then forget about the need to occasionally review this information. Profile information is much more easily data mined by hackers in particular, than information shared in the Question and Blog sections and you'll note that the site's business model does rely on raising funding through allowing research partners to access anonymised and aggregated data which members have the OPTION of providing through the Data Sharing settings.
Depending on our situation, we may need to think carefully about whether we use our actual name as part of our username (and perhaps whether we disclose our age and sex) and the value or otherwise of entering our location - particularly if we live in a sparsely settled area.
Most importantly, each time a question is asked or a blog written, users are given the option of limiting visibility to (signed in) members of this community or to everyone. Perhaps for more sensitive questions/blogs we should select the (non-default) option of 'visible only to members of this community'.
This site has a great Privacy Statement which is well worth reviewing, as it answers very well your questions on the level of security applied to the site (looks pretty good to me) and to what degree your personal and non-personal identifiable information is visible to others:
(Also available from the Privacy link at the bottom of the Directory page)
I'm very pleased to see that site passwords are protected using salted cryptographic hashing, and cannot be decrypted - unlike what happened with Linked-In's embarrassing security breach last year! (Their passwords were not salted and hence were hackable given sufficient computing power and time when hackers gained access to member records.)
Thanks to this site's design, we can still be anonymous and yet share deeply if we take some precautions and use the sensible privacy features provided.
As in any relationship, each of us has to decide the degree of openness with which we are comfortable. Deeper sharing can bring greater blessings, but there is also the risk of greater hurt. Hopefully, members will feel more confident to share and support each other if they have taken the time to carefully consider what level of anonymity they are comfortable with and understand how to use the site's privacy features effectively. It is good to see this site developing into a growing, supportive community and I hope that no-one ever faces repercussions from inappropriate use of the information disclosed here. That would be a pretty low blow.
Further to my comment on the appropriate use of the visibility option when posting questions of blogs, I should have pointed out that the site Privacy Policy states "Restricting questions and blogs to members of the community only also means they will not be analysed for research."
AussieNeil a thought your item number 1 raised for me was about the message module. this is out of sight of the community's ability to self moderate inappropriate content or unsafe information. The site guidelines instruct that members should not paste personal contact information on the site though may choose to do so in the Messages module. and that members should have general regard to their online safety..This is an area when you should pay particular attention to your safety as you are without the support of others..
Be mindful of the information you choose to provide.
Thanks for mentioning the message module. I had intended to make the point in my response to Newdawn that members should consider using this feature as a means to directly and privately contact another individual.
To use it, just go to the Directory and select the person you wish to correspond with then click on 'Send me a message' under the member's supplied image.
Hi as someone who has been a victim of bank fraud I can vouch for the need to not only be safe but feel safe. I don't think there is a system in the world where hackers cannot get to if they try hard enough. Even the Pentagon isn't safe. I use this site to communicate with others in the same boat as myself. My own CLL is out there. I'm happy to disclose but if you are working its a tricky situation. Also in my own situation insurance is of concern. I still have car insurance (I have disclosed) and want to keep it for as long as possible. I do get worried about repercussions but also acknowledge the need to go about daily life as normally as possible.
Why anyone would be interested in my medical records is beyond me... some old fart with CLL... ' Oh look his lymphocyte count went up last month'...fascinating!
But I'm an open kinda guy... others perhaps aren't... for whatever reason... which is fine.
Our system in BC Canada uses secure barcodes to access medical records.... I carry these codes with me both on a flash drive and in printed form...for emergencies...
All my doctors, with my permission, have access to my all medical reords, it is fully integrated system. Could it be hacked...ABSOLUTELY! So can my bank account....
I also carry contact information of my doctors, and notices like 'Irradiated Blood ONLY' Fludarabine treated patient...and so on... treatment history etc. etc.
Frankly, I would rather that paramedics have access to my medical records in an ambulance, than wait 25 minutes to get to the emergency room...
I don't want people to feel afraid using this site in any way. It's a cancer support and information site not the procedural manual for the CIA!
And to a point, I agree with Chris. Who would care about my medical details, fluctuating lymphocyte levels or whether I'm turning into a blubbering wreck as a result? Well I hope people on here would obviously!
But I haven't disclosed my condition and I don't feel the need to justify that. It's not that I'm medically enigmatic or special, it's because for a myriad of reasons, it's not right for me. So I have to protect my identity not from research companies, advertisers or medical opportunists but from my family, my friends and my colleagues.
I don't want somebody reading through for whatever reason and thinking, 'doesn't that sound like Newdawn?'
But...I don't want to be a faceless, anonymous, androgynous CLL sufferer from an unknown country with an age that is anyone's guess! I want to be me with a story to tell, advice to give and some kind of identity that helps others to share this rotten experience with me.
It's a fine line and at times I delete and re-think the information I'm disclosing. And I will use the safeguards suggested.
The truth is people make unfair judgements about any kind of illness. CLL can be commercially sensitive and affect careers. It can affect insurance premiums and I could imagine severely hamper chances on a dating site! (doesn't affect me obviously!). I don't blame people wanting to keep 'their changed reality' to themselves.
But I want us to keep a sense of perspective about this. Hackers will get in anywhere if they're determined enough but in the scheme of gain and profitability, I can't help thinking this wouldn't be their first port of call!
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