1) New events in event feed
We've updated the items you'll see in your feed when you subscribe to another user. If you subscribe to another patient, you'll now see a notification in your feed if they : joined PLM, filled out basic info, added/updated about me, added/changed profile picture, left a comment for another user, added a condition, stopped a treatment, filled out labs, completed symptom survey, updated condition history, added hospitalization, added symptoms.
2) Patient search cartoon
Want a quick primer on how to use patient search page to find patients like you? Now we've got a nice graphic to illustrate how to use the patients page to find patients like you.
3) Nugget changes
You'll notice some small changes to your patient icon, sometimes called nuggets. These changes allowed us to make the nuggets fully accessible for our members who rely on keyboard-only browsing. And all users will no longer be able to accidentally trigger the tooltip by hovering. You'll have to click the "i" button to see the additional info.
Additionally, we will be offering new settings for members with low vision who want to customize the look of thesite to make it easier to use. All users may be interested in the "turn off all caps" setting. :)
4) Invite people to PatientsLikeMe
Need a reminder on how to invite people to PatientsLikeMe? Check your home page for this handy reminder on how to get to the invite tool.
5) Outcome history pages show correlating mini nugget so matter what your primary condition
This is some clean up from some previous work where the mini nugget would only show for your primary condition, no matter what page you are viewing. Now it will show the appropriate mini nugget for whichever history page you are viewing, no matter what your primary condition is. Thanks to the users who pointed out this inconsistency, and thank you for your patience while we fixed it!
1) Invite your friends to PatientsLikeMe!
As you all know, we've been accepting new members by invitation only since March 8th. Yesterday, we opened the doors so that anyone with any condition can join. Now that anyone with any condition can join PatientsLikeMe, we wanted to make it easier for you to invite others. You can upload your address book from Yahoo, Gmail, Windows Live or Hotmail and easily select which of your contacts you want to invite to PLM.
PatientsLikeMe will not send any emails to your contacts other than this invitation. PatientsLikeMe retains your invited contacts' email addresses for verification purposes, but these are never shared nor displayed; all other imported contacts (i.e., those you did not invite) are not stored.
2) New homepage and About us page
To mark our grand re-opening, we have a new homepage with some great new features.
Check out the event feed at the top of the page (you'll have to log out to see it) to see recent activity by members who have chosen to make their profile publicly viewable.
You'll also notice a very cool illustration in the center panel when you first arrive:
When new visitors start sharing about themselves or looking for patients like them, we'll show the results in the place of the illustration.
If you haven't already, check out the new About us page complete with a video from Jamie and Ben Heywood.
3) Forum improvements
We've made several improvements to the forum in this release.
a) "Forum members" page. Now you can click on the number of members to see a page with tabs that show All, Patient, Caregiver, Guest or members.
b) "Unread & Updated Topics" page
We also have a new page to show all new topics you haven't read and any updates to threads you have read. There are tabs for each room.
Clicking "Unread & Updated Topics" in a specific room will bring you to the tab for that room.
c) Clearer icons to distinguish between things you have read and things you have not.
Forum topics you have not read are marked "unread".
Forum topics you have read that have new posts are marked "updated".
d) Permalinks to individual posts
Clicking the date and time of a post will give you a link directly to that post. You can then email the link or paste it in another thread.
4) Condition Resolution
Now you can indicate that a condition has resolved with or without treatment. At the bottom of your condition history page, you'll see a new option answer choice under "Would you like to continue updating the progression of this condition on your profile?" If you select "No, this condition has gone away or was misdiagnosed" then you'll have the opportunity to indicate how it was resolved or what new diagnosis you may have.
We will show you the resolution reason on the header of your profile page.
and you can search for people on the patients tab whose conditions have resolved.
5) HIV labs now appear in the Labs & Tests section
HIV labs now appear on the Labs & Tests section of the profile navigation and share the same entry form as all other labs.
6) New Flash chart on the post PRO page
If you have taken the Epilepsy PRO, you'll notice a new chart on your post PRO page that shows how your quality of life has changed over time and when you are eligible to take your next PRO.
1) Invites for current members. Starting today, you can invite others to join PatientsLikeMe--anyone with any condition. Do you know people who want to find other patients like them? Invite them to join! Here's how:
Your number of invitations is connected to your how many profile stars you have.
3 star – 10 invites
2 star – 5 invites
1 star – 3 invites
0 star – 1 invite
2)New filtering tools for doctors/researchers/public pages
People with non-patient accounts can now filter symptom and treatment reports to only show results from people with one condition. Previously this functionality was only available to patients, but now if a doctor or researcher wants to see a treatment report filtered only by a patient with a certain condition, they can get that information.
Additionally, we now handle symptom and treatment report filtering for patients with lots of conditions much more gracefully. Your primary condition will show up first in the list, the rest of the list will be sorted in alpha order until there isn't room, then we show a drop down and allow you to pick from any other condition you have.
3) Patient search shows patients with your primary condition by default.
Now when you go to the patients page, you will see other members with your primary condition by default. It's easy to remove that criteria or add different search criteria if you want to narrow your search results.
We also made some improvements in the "patients like me" results so that people are more likely to get results when they have multiple conditions.
4) Doctor/Researcher sign up changes.
People who want to register with a doctor or researcher account won't be able to log in until we verify their credentials. Previously we allowed them to join as guests first and verified their credentials later.
Most the changes we've made over the last 6 months have been leading up to today's upgrades. We're excited to share these new features with you and hope that they will help you accurately capture your health experiences. You can hear more about why we made these changes in this video from Ben and Jamie Heywood, and you can learn more about how to use the new features in this screencast.
1) Starting today, you can add multiple conditions to your profile:
By adding a condition, you can monitor what's happening with that condition on your existing profile. You will have access to any outcome scores we have for that condition (such as Functional Rating Scale, or FRS, for ALS patients, Multiple Sclerosis Rating Scale, or MSRS, for MS patients, or our Quality of Life rating for most other conditions). You will also automatically be added to the forum room for that condition. If we don't have a room for that specific condition, you will be added to a more general room for similar conditions (for example, if you add Asthma you will be added to the Lungs and Respiratory room).
If you list multiple conditions on your profile, you will be asked to choose a primary condition. Your primary condition is the one you want to focus on the most and/or has the biggest impact on your health. Your primary condition will appear in your patient nugget, the header of your profile, and determine what you need to earn three stars. You can change your primary condition at any time.
If you want to add a condition we haven't entered in our database yet, you can request that we add it. It will be marked as pending on your profile until we have approved it. Then you will receive a PM from us letting you know when we have added this to our database.
2) Patient Search:
Now you can search for patients like you across the entire PatientsLikeMe community on the patient search page. You can make that search as wide or as narrow as you'd like. As always, you can search by age, gender, stars, treatments, and symptoms. You can now also filter your patient search by any of your conditions—or also conditions you may not have. Conditions you share with your search results will show the green checkmark.
In order to support the changes we've made across the site, we've also made some big changes to the forum.
Before today, you only had access to one forum room—the one for your condition that you signed up with. This upgraded forum is just that—one forum, but separated into several rooms. You have been automatically added to a room for each condition you have previously shared through your profile. All our existing conditions still have their very own room. Other conditions, like Asthma have a more general room, like Lungs and Respiratory for related conditions. There is also a PatientsLikeMe room where you can connect with the entire community.
You can join different rooms by going to the forum directory. You can choose to join a room as a patient, caregiver, or guest. To join as a patient, you'll need to add a relevant condition. When joining as a caregiver, you have the option to enter the username of the patient you are a caregiver for (if your patient is in the PatientsLikeMe community). If you are simply interested in a room or have some related symptoms or treatments being discussed there, you can join as a guest.
Within each room, you have many of the same features available as before—such as searching, filtering by tags, and viewing helpful posts and posters. At the top, you'll always know which room you're in and what your role is in that room. There is also this dropdown so you can switch rooms quickly.
1) Patient Search
We've made some changes to the patients search page including an easier to user first view, more advanced filters (years since first symptom, age at diagnosis) and hopefully an easier to understand interface. Patients in some communities (Mood, Fibro/CFS and ALS) will also be able to search by multiple conditions in their disease community.
The first change you will likely notice is that the first time you view the page, there are fewer controls displayed. The current page can feel very overwhelming with all the filters displayed, so we wanted to show a more minimal view with the most important items (age, gender, condition, symptoms and treatments) at the top of the page.
You'll now see all the conditions a patient has next to their search results. There is also some "give something, get something" highlighting in green for conditions that you share with the people in your search results.
Additionally we added some new sorting options so that you can sort your search results by newest patients, recent updates, username, profile views, helpful marks or forum posts.
If you want to save a set of search results to share with others, you can do so with an easy to share url.
There are also a few things we removed from patient search.
First, we removed the "equipment" section buttons in ALS. Those pulled from data in the FRS- not from treatments listed on the profile page, which meant you could have oddly duplicative results. Now if you want to search for others using a wheelchair, you can do it using the treatments search box.
Second for right now, you can't search by comorbidities in transplants and epilepsy- we will bring back the ability to search for those in a few weeks.
2)Profile charts will remember your last timeframe
By default, your profile charts always show the last 6 months of data. Now if you change that timeframe, (say to 1 month or 2 years or some other amount of time that makes sense to you) we will remember that timeframe the next time you log in. Several members in the mood community have asked for this- some of you like to be able to see only the last month's worth of profile data instead of 6 months.