1) Psoriasis features
We have several new features available for PatientsLikeMe members with psoriasis.
The Dermatology Life Quality Index (DLQI) is a new survey that will help you measure the impact of psoriasis on your day to day life.
When you answer these 12 questions, you will get a graph of your results on your profile charts so you can see how things change over time.
Body Surface Area (BSA) is a lab that measures the percentage of your skin that is affected by psoriasis. Your palm represents about 1% of your body surface area so you can use the number of palms you think might be affected as a good proxy to estimate the percentage of your body affected.
Patients who list psoriasis as their primary condition will have a new patient icon or nugget. This icon incorporates the latest DLQI and BSA scores, along with your age, gender and latest instant me status.
You may have seen guides on the treatment history page before, but now we've redone them to only show one at a time. These guides will appear automatically the first time you visit the page, and you can either dismiss them right away, or get them back later by pressing "show guides" at the top of the page.
We hope to add guides to many other pages soon.
3) Sortable labs
A few weeks ago we launched the labs feature. As more labs get added we realized many of you wanted to sort your labs in the order that made most sense to you. So now you have 2 options you can drag and drop them into any order you like, or you can hit the arrow to move any lab to the top of the list. So if you have one lab you update more frequently (say blood glucose) you can move it to the top of the list for easy updating.
Labs and Tests
We are excited to share some big upgrades to the labs and tests available on PatientsLikeMe. Previously labs and tests were only available to patients with certain conditions, and we received lots of suggestions asking for more detailed labs and test results on the profile.
We still support the labs and tests we previously added and we're in the process of adding several more. You can search or browse the list of available options, and if there is a particular lab or test you would like to see added email the Health Data Integrity team ( email@example.com ) to ask them to add it.
Public condition page changes
Last release we debuted new condition pages for logged in users. Now we are testing those changes (with a few small tweaks) for logged out visitors.
Additionally, the condition names in the header of your profile charts now have a link to the condition pages. So if you view another member's profile and see a condition you don't recognize, you can click the link to view the condition page and learn more about that condition. Or click the link on your own profile page to learn more about who else has your condition at PatientsLikeMe.
1) New condition pages (logged-in only)
We are excited to share a new look and feel for our condition pages. Here's the IBS page as an example.
These condition pages are organized around 5 central questions we think patients have when they are learning about a condition at PLM.
What is this condition?
What is it like to have this condition?
What do people take to treat this condition?
Who has this condition at PatientsLikeMe?
Where can I talk to patients with this condition?
The public condition pages still look the same. For now. :) There are a lot of future improvements we have planned for these pages, so stay tuned for more soon.
2) Hide User Option in the Forum
Users can now hide content from specific members in the forum. Each username in the forum now has a pulldown menu where a member can chose to Hide member's posts:
When a member selects this option, the posts are hidden and this placeholder appears:
If the member has accidentally selected this option, there is a one time opportunity to undo this action.
Users can see all of the members whose posts they are ignoring by visiting the blue side bar of any top level forum room page and clicking Show additional options.
Here users can see and edit the content they are hiding.
1) Merge symptoms that are actually conditions into the proper conditions
Before February, the PatientsLikeMe platform supported only a limited number of conditions. As a result, many members added conditions as symptoms. Although a good hack, we now support any condition so we've merged those symptoms (which are really conditions) into the corresponding condition. For example, if epilepsy was listed as a symptom on your profile, you will no longer see the symptom epilepsy on your profile charts, but you will see condition epilepsy and you can add details in your condition history. Merging these duplicates helps make the treatment reports more useful (see purposes below: there are two of each fibromyalgia, major depressive disorder, and generalized anxiety disorder). We can now also remove the yellow flag on the treatment reports indicating there might be duplicates while we make medical upgrades.
2) Messaging improvements
On your messages page (formally called inbox), you'll now see an inline preview of the message, more messages on the first page, and can click anywhere on the row (not just on the subject). You can also sort messages, search by subject or username, and select which admin you'd like to forward to. When you send a message, we'll autocomplete the To: field with members you've communicated with before, and the text box will expand as you type. The text box expansion will also happen with forum replies, so you may notice this change there first.
3) Remove all calendar pickers- move to yyyy/mm/dd and allow incomplete dates for treatment starts & stops.
We've heard over and over again from members that they don't like using the calendar pickers to select a date, especially for dates many years ago. In places all over the site, members were prompted to select a date via this calendar picker. Now we have removed all those calendars and switched them to year, month, day pickers.
Old date picker:
New date picker:
Because we know that people don't always remember exact dates, we've also started to accept incomplete dates on treatment start and stop date. Our hope is to continue to spread the number of places we accept incomplete dates throughout the site, to make it easier for people to share their information without worrying about the exact date a change occurred.
If you enter an incomplete date on a treatment, that information will appear on the treatment bar rollover.
4) Treatment History page re-styling
Your treatment history pages are now more similarly styled to the symptom history page.
Recently, many of you have used and tested out new features that we rolled out in August. As we watched you use these features, we learned a few valuable lessons about what works well and what doesn’t; what makes sense to you from a user perspective and what is missing from a research perspective. As a result of this learning, we've made the changes below to improve how we capture and reflect the data you’re entering in the most meaningful way.
If you would like to give us feedback or talk to others about these changes, you can join the discussion on the forum.
1) Symptoms and Side effects changes
In August, we merged all your data for symptoms and side effects with the same name. As a result, you saw one chart (or one line) on your profile with all that information. Our goal was to make it simpler to see what you were experiencing in one place. While it makes sense to simplify how you see this data on your profile, it ended up combining data that was captured in different places, in different ways (making the data too messy to use from a research perspective).
To address that, we've made several changes. Most importantly, all of the data you entered regarding your symptoms is the same. To update your symptoms, you will still go to My Symptoms. On that page, you may notice side effects you had listed are now under “Previously Monitored Symptoms.” In the past, if we felt that a symptom was relevant to your condition, we would ask you to continue updating it on a regular basis, even if you were not experiencing it at all. Now, if you prefer not to share these symptoms going forward, you can click on the symptom history page for that symptom and click "Stop monitoring" and we will no longer ask you to record that symptom.
Since we’ve asked you about your experiences with symptoms and side effects in different ways, we will no longer combine those answers on one line on your profile. So now you won’t see side effect severity data (entered before August 11th) on your charts. You can still say you experienced a side effect as a result of taking a treatment, but we won’t ask you to rate the severity of your side effect. If you want to chart changes to side effect severity over time, you do have the option to add a side effect as a symptom on your profile
If your side effect is a condition (e.g. Diabetes), we will automatically add that condition to your profile
Additionally, while we have always asked about your overall experience with side effects in the treatment evaluations now you can add individual side effects inline in the evaluation.
2) Chart changes
You'll also likely notice several changes to your profile charts. First, we have grouped the treatments in your chart by treatment purpose, enabling you to see all the treatments you take for a particular condition or symptom in one place.
We've also gone back to only showing one level of connection underneath a symptom or a treatment, rather than the several layers of causes and consequences we used to show.
There is also the pretty new side effect icon you'll see next to treatments that have side effects. To see the side effects, you can hover over the treatment name or bar. Through this new rollover you can see the complete list of all the reasons you take a treatment, as well as the side effects you have reported, dosages you've taken, and a brief description of what the drug does.
3)Treatment and Symptom history page changes
We've made some changes to the pages you use to see all of your information about a particular symptom or treatment. Rather than "causes" and "consequences" we've simplified the page so you can quickly see the treatments you are taking to treat your symptom (if any), any treatments that have this symptom as a side effect, and any conditions that PatientsLikeMe considers relevant to your symptom.
4) “Causes” aren’t displayed on your profile
In August, you may have noticed a new question that prompted you assign a “cause” to symptoms, treatments or condition. Our goal was to help you more effectively record the relationships between those parts of your health. Some of you told us this was a bit confusing. We also realized that the where and how we asked that question wouldn’t produce the most meaningful data for patients, nor researchers. So as of today, we will no longer ask you to define the "causes" and "consequences" of your conditions, treatments, and symptoms. Additionally, we won't display the “cause/consequence” connections you made previously. We still have that data about the connections you created, but we’re thinking about how to bring back a better version of these tools to make that data more meaningful to you.
On your My Symptoms page, symptoms that were previously referred to as “primary symptoms” now display the “relevant conditions” (or conditions known to have a connection to a specific symptom) next to the symptom. You can’t delete these relevant conditions, but you can delete any symptom that you don’t want to update over time by visiting that symptom’s history page and selecting “Permanently delete my entire <symptom> history.”
5) Popular purposes
We made an improvement to the way you add treatment purposes. When you select "Add a purpose" you'll now see the three most frequently listed purposes for that treatment. The most common purposes still might not be the reason you're taking a treatment, but we hope it will help some members enter the right data quickly and easily. If you want to enter a different condition or symptom as the purpose for taking a treatment, you can type that in the search box to get results from your profile or from our database.
6). Patient search changes
We also made a few changes not related to the the things above. We reduced the number of conditions we show by default on the patients page. Initially, you will only see a patient's primary condition or the condition(s) you were searching for. To see all of a user's conditions, simply click "show more".
7) CD4 limit
We also changed the upper limit of cd4 count allowed from 1600 to 2000, based on user feedback.