Hi Greig,
Itās about consent - which as noted above is pretty important in health IT. The original use of postcode in profile is as per the image above. There is now a new section in your profile where your map location is highlighted and explicitly noted to be public. But everyone has been opted-in automatically.
To summarise the feedback thusfar:
It seems to be very popular, and folk can see the potential utility.
There is scope to improve / iterate it further.
There is a privacy vs utility tension, and several folk would like the existing data use to be restricted.
Of note:
Perhaps we can have the region generated from the previously entered postcode as per:
Now is that good enough, or do we need to scrap the whole thing and start again?
Iāll implement the most popular option in the poll above this evening once things are quiet so that any new locations that folk have inputted / are inputting isnāt lost.
@NathanK, Here is the screenshot of what I see when I click on the map.
Awesome Nathan, great tool and nice to see where we all are.
Kind regards
I think this is a useful learning experience.
I donāt personally have a problem with this from a privacy perspective and I wouldnāt have provided my postcode if I did as this seems like a pretty obvious use of that data (eg. Linkedin doesnāt have my postcode) but I understand others do have an issue with this.
My suggestions are:
Privacy Policy - Support / How To - eHealth Forum (hinz.org.nz)
Jon
Great idea!
I think whichever level the map shows - when you click on someoneās profile it should open a new window.
Otherwise you need to load the map each time and press the ābackā button
Hi Nathan, I agree this is useful, but also agree it should be an optional opt in on signing up to the site, which is the case for mailing lists to meet privacy standards. Good to see the vote to decide the level of opt in, ie postcodes, regions etc.
I canāt access the voting by clicking on your Vote link - can you please advise how to get into vote? I must be missing something.
Thanks, Kath
Great feedback - Iāve noticed that too. It is a limitation of the plugin and Iāll see if I can get that improved.
I agree with this - itād be great as an opener of just the numbers of people in the areas - but not linked to profiles at this stage.
So simply a number in each area would be great 
Due to a fair bit of concern raised over the secondary use of our postcode data, Iāve pulled the data off the map which came from our postcodes. Iāve also closed the poll above.
Many people have indicated their location on their profiles already (using the old system) - this data will be migrated to the map shortly as it was for the same purpose and they explicitly opted in.
Now that we can record location more explicitly, there is no need to have Postcode stored at all - so that field is going too. The data will be retrievable purely for the purposes of loading it onto the maps if folks indicate their consent for this.
Whew - it is good to see how passionate we are about data & privacy here in NZ. For those who are interested, here is the Privacy ACT 2020 explained:
https://www.privacy.org.nz/privacy-act-2020/privacy-principles/
And some health specific privacy stuff (including situations when there is a competing ethical principle):
https://www.privacy.org.nz/privacy-act-2020/codes-of-practice/hipc2020/
Well, this has tanked a bit now that the excitement has gone out of the sails!
In order to relaunch this successfully, it would be great to have the thoughts of those who take privacy seriously.
How can we make this work while respecting the privacy of our members appropriately?
Torpedoed is more the phrase that came to mind. As a second-class citizen on this site and one with a fenestrated brain leading to a neurodivergent mind, I would argue their stance has nothing to do with privacy and everything to do with maintaining the power and privilege of the entitled.
Privacy as a concept can be unpacked in many different ways. Let me choose a concept like privacy is about the process a system uses to actively maintain my dignity and mana so that I can exercise my agency and autonomy to participate for mutual benefit. I read the consent on the way, and the map was consistent with my understanding of that consent. As someone deeply paranoid and hypervigilance, activating the map triggered zero reactions. So a good first-pass sniff test was easily passed. My focus was entirely on that I couldnāt read the numbers on the map.
I argue that the version of privacy used instead was one of entitlement. We all got one vote to join a community to share information and experiences. The first-class citizens, the elite, get a second vote as to whether they will allow the rest of us to exercise our agency and autonomy. They could change their settings or leave, but their position was I couldnāt share and could not participate. The feminist criticism of privacy is about how it is used to maintain and perpetuate abuse and repression of the vulnerable in society. A similar argument was advanced by MÄori over access to data during COVID but couched in the language of colonialism.
The clear message is that CiLN is a welcoming and inclusive place but only for the elite. Second-class citizens need to know and stay in their place, existing only to meet the needs of first-class citizens. Our existence and efforts are only contingent on not upsetting the non-participating elites.
As for how to push the reset, I would return it to the consent. Have we got this right? Can we better inform members what they have signed up for? Have we got the site settings right so that they reflect the consent? Do we have a robust process about when to switch what stuff on? If you had asked me, I would have supported your original decision. When we switch something on, can we clarify how individuals can opt out without poisoning the well for everyone else?
Anyway, these are my thoughts and my apologies for the mini-rant.
Hi Greig,
As one of the first people to raise concerns about the privacy aspect of the map, please let me reassure you that my position is not that you ācouldnāt share and could not participateā. I think that the map is a great idea for those that want to share and participate. My concern was with the rollout. If there had been an announcement that the map was coming and users were invited to participate by ticking a box or similar, then there is no issue.
The problem is that the data that was used was collected for a different purpose. The post code field had the label āfor arranging regional eventsā. The reasonable expectation is that the post code would be available to event organisers or forum admins, not every single user in forum. Using the data for any other purpose is in contravention of the Privacy Act.
I would argue that displaying someoneās location on a map available to all users, without their prior knowledge or consent, is removing that userās agency and autonomy, not the other way around.
And this is the key - thanks Cameron. Utility and privacy must be bedfellows rather than in competition. We canāt neglect one in pursuit of the other!
The challenge from the technical / community perspective is that is jolly difficult! It just is really hard to get the requisite momentum, and to get enough folk to actually respond without chasing them hard (which is both irritating and hard work).
There is also a missing technical piece (wizard to enable easy updating of location data) which really needs to be in place first.
How about we aim for June (after the Leadership Summit) for a proper launch?
Welcome to the world of Product Management 
Releasing features, getting users engaged enough to uptake while also staying within the bounds of regulationsā¦ itās a fun time!
Thanks, Cameron, I was trying to discuss the issue and not personalise it. I read the original information request and its usage on this map quite differently. I would argue that you took a narrow view while I took a broader one. I perfectly understand from your perspective this usage does not work for you and that you would opt out. Fair enough.
In contrast, I have a visual impairment and found the UI of the map impossible to read. I didnāt cry discrimination, I just made a suggestion that might make the map more accessible to others as well without impacting those who seemed to be able to cope just fine. This is what I think of as being equitable and inclusive. I hope this makes sense.
2 posts were split to a new topic: Visual accessibility on the Users Map needs improvement
Hi Greig,
Being equitable and inclusive is definitely what we should all be striving for. It means taking into account different peoplesā needs and how they might be impacted by certain features or changes.
When assessing the various needs of different people and the impacts of those needs, a major factor to consider is in the ability to correct the issue after the initial release.
The accessibility of the UI is an issue which you, and other users with visual impairments, will continue to be impacted by until the UI is changed. Once the UI is improved to the point that visually impaired users are able to view the information then the impact is reduced or removed from that point on.
(@NathanK here is a good resource for accessibility standards on the web , also if you google āWCAG2 Checkerā you can find tools that will assess the contrast and give you a rating)
In the case of privacy, imagine a user in this forum who would be negatively impacted. Such a user could be someone who has an anxiety disorder or experienced past trauma that can cause them to be concerned about their safety, or heaven-forbid has moved cities to escape an abuser who works in the same industry. If their personal information is shared with people they donāt know then that canāt be taken back, the information is out there. You canāt unring a bell. That hypothetical user who had escaped an abuser would now be thinking āDid they see the area I live in before the info was taken down, do they know where I am now?ā. The impact on that user would continue after the map was changed and their information was hidden.
Is this likely to be the case in this scenario? I hope not. Is it possible? Definitely.
Itās an extreme example, but there is no way of knowing for sure if there would be a user that could be impacted to that extent, so the possibility has to be accounted for before information is shared.
Thanks, Cameron. Having standards for such will simplify developersā lives and avoid the need to reinvent the wheel continuously.
With respect to any hypothetical community of users. They will have made a positive choice to risk joining the forum, so we need to respect that. I would always encourage engaging with marginalised communities and listening to their concerns. Maybe this is an opportunity to establish a beta testing community for new features on the platform to give public or private feedback. @NathanK, is this possible?
