Pernicious Anaemia Society

New Health Unlocked Feature: Needs Assessment - Just Posted On The Forum

Hi All. Just a couple of words about the 'Needs Assessment' recently posted by HU:

First, users on other sites where it has been posted say that the questions are often unclear and contradictory...some gave up half way through...many raised questions about the purpose and benefit(s).

Second: I've been unable to determine what (if anything) this information may be used for (i.e. is it for personnel information only or will it be shared or used for anything else).

And more importantly from my point of it, like open posts on this site, visible to all and potentially available on the internet (even if only under user name). Don't know...but I'd like too.

Be aware...I started to fill in the form (just to see what it is)...then went back after a couple of questions to check on edit functions...and discovered that once filled in, the form cannot be deleted (unless there this option is available at the end of the form - I didn't get that far). Worrying without knowledge about what happens to the information.

Will this be a useful tool for some...really have no idea.

There are 'unknowns' about it that worry me (this is a public forum and unlocked posts here may appear anywhere else...and such information can be extracted and idea if that's the case with the information contained in this form).

But perhaps I'm a suspicious creature...and others may have a very different view 🤔😉.

Here's what HU say about this 'tool'...(sorry, unable to italicise)...

Why did we make this?

Health is complex. Disease states or conditions don’t limit themselves to causing physical symptoms and effects, they often impact every dimension of life. They can negatively affect mental wellbeing, restrict the ability to complete certain daily activities, or produce problems in finding adequate care or information.

Depending on individual circumstances, the same physical health diagnosis can create very different needs for individuals with the same condition. It can be hard to categorize the variety of needs at a given time, which in turn limits the ability to self-manage priority needs. We want to do what we can to solve this problem by helping you identify and prioritize your needs.

But, what is it?

Our needs survey is a general assessment that has been designed to support self-management by identifying needs across five dimensions: psychological & wellbeing, independence & activity, treatment & care access, family & social, and information & support. The assessment will provide a custom report that can:

- Categorize and prioritize your top needs at the time of assessment

- Improve awareness and communication of needs

- Show you a breakdown of common needs experienced by others in your community

You will have the opportunity to take the assessment at repeated intervals, allowing your changing needs to be reflected in the assessment over time.

This needs assessment is the initial version. Included in your report is a link to a quick (promise!) feedback survey. We would love if you could fill this out and give us any feedback you have so we can hear your thoughts and suggestions.

Where do I find it?

You will find your needs assessment in your user drop down menu at the top of the page. You can navigate back to this section at any time to see your report, which includes your personal report section as well as up to date community breakdowns.

End of HU comments.

And here's a link to a post about the issue from another HU community where the 'Needs Assessment' has been posted:

If anybody has any questions or comments about the 'Needs Assessment', please email:

Note: The Health Needs Assessment is not an initiative designed, promoted or endorsed by the PAS

4 Replies

My understanding is that the ap is intended to help people evaluate whether support networks and coping mechanisms are meeting their needs. I also believe that the reports are only accessible from your profile so are personal to you but I am seeking clarification from HU on that.

Personally didn't find it useful at all - as it wasn't really relevant to where I am now.


you do seem to be able to get rid of the 'post' by clicking on the cross that appears in the top tight next to the title - not sure if you only have to do it once and that is it. only time will tell

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Ah ha...thanks Gambit...will give that a try 😄.

I notice that HU are extracting data from the Assessments to produce community statistics so I've asked HU for clarification about how (and with whom) this data will be shared.



Thank you, Foggyme, for your appraisal.

A comment - if information is extracted from it, it will be biased towards people who can be bothered to fill in the forms and not representative of people in general or even those using HU!

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