Focus Group Regarding the Changes to the Forum

I didn’t get any email from them but I like the old layout of the forum.  It was user friendly and much more welcoming.

I received an invitation too, and did sign up. I am wondering too if the forum is less easy to find than it used to be? They also created more forums many of which dont have up to date postings. Maybe going back to the old format plus making the forum easier to find might help.

It could also be that treatment options have standardized compared to a few years ago. Still, I would like to know more about new approaches such as TILs and other trials, in case immunotherapy does not work.

I hope they will improve the Forum, get rid of the silly emojis and just make it easier to use and more compact (the old format took up less screen space)

 

I very much agree with Mark.  The Categories of postings, all the tags and labels – end up crowding the screen and – ironically – make things harder to find.  The search tab is next to useless, even when you know exactly what you are looking for.  The emojis are worse than a joke.  The loss of the patient profiles diminished the value of the entire site immensely and showed a supreme lack of understanding by the powers that be of ~ 1. their importance  2.  the difficulty of inputting them again by folks who already have their plates more than full.

Having been on an original focus group and having exactly ZERO impact on how this ‘new and improved’ version turned out – not to mention yelling a great deal here and in private emails since – I am not sure if anyone is listening now.  However, I implore all of you to try.  Here is the entire email I was sent:
<p class=”yiv3063026333MsoNormal”>Dear MRF Patient Forum users,</p>
<p class=”yiv3063026333MsoNormal”>As you are aware, the Patient Forum went through some updates in 2020 to mixed reviews. We want you to share your thoughts on the Patient Forum: the good, the bad, the ugly, and everything in between.</p>
<p class=”yiv3063026333MsoNormal”>The MRF will be hosting 2 focus groups:</p>

<li class=”yiv3063026333MsoListParagraph”>Friday, November 12^th from 10am-11:30am ET/7am-8:30am PT
<li class=”yiv3063026333MsoListParagraph”>Monday, November 15^th from 2pm-3:30pm ET/11am-12:30pm PT

<p class=”yiv3063026333MsoNormal”>Please complete this very brief survey to note your interest in participating and which time you’re available to attend: https://www.surveymonkey.com/r/MRFPatientForum. <b>To ensure participation in a focus group, please complete the survey by Monday, November 8^th.</b> A Zoom meeting link will be emailed to you once the focus groups are finalized.</p>
<p class=”yiv3063026333MsoNormal”>Helping to lead the focus groups is MRF Board Member, melanoma survivor, and long-time Patient Forum user Stan Adler.</p>
<p class=”yiv3063026333MsoNormal”>We hope that you’ll be able to join us. Please reply to this email with any questions or comments.</p>
<p class=”yiv3063026333MsoNormal”>Thanks, Amy</p>
The email from whence the missive cometh was:  [email protected]

For what it’s worth.  Wishing you all a great day.  celeste

Also – the response I just posted – shows the gibberish that occurs when you ‘copy and paste’ something to the board.  Yet another thing that needs to be fixed.  c

Hi everyone: the email was sent to Forum users who were members prior to the transition to this new format (using prior to late 2020) and who have posted within the last 3 months. If you used the Forum prior to the transition, didn’t receive an email, and would like to share feedback, please use this link to complete a brief initial survey.

Future focus groups may be conducted with members who have joined in 2021 to obtain additional feedback.

 

 

Hi everyone: this is a final call for those of you who used the Patient Forum prior to the transition to this platform (late 2020) who would like to participate in our focus group sessions regarding the Patient Forum. Please complete the survey using this link no later than midnight ET today, Monday, 11/8.