Wednesday, September 17, 2014

Clinical Trial participants are people too

Patients who participate in clinical trials want things to change.  Should Patients have any control over the clinical trial process? Traditionally, clinical trials are run according to the protocol designed by the pharma company, driven by statistics required to prove a drug is safe and effective. The visits are designed to collect the required data.  Sites are recruited, then sites find the patients.  Patients come in for their visits, if they are eligible for the trial, they enroll, receive their meds and come back for visits as dictated by the protocol.  When the study is over, they will typically be told what treatment they have received, and may receive some follow-up care.

Patients want all this to change.  Patients want to talk and communicate with other patients, and they want to have a direct impact on the clinical trial process.  It makes sense that patients would like to see some flexibility in their visit schedule, or want to have less blood draws.  However, according to speakers at a recent patient-centric conference, patients want these things, but they also want to help determine quality of life (QOL) and safety and efficacy indicators for their individual condition, and they really want access to their data.

One of the patient advocates worked with a pharma company that had a study recruiting patients with ‘Mental Illnesses’.  The advocates explained using ‘Mental Illness’ to describe their condition wouldn’t attract many people. They changed the title to be a study for ‘Emotional Wellness’ and were able to better recruit patients for their clinical trial.  According to this advocate, patients want to clinical trials to look sexier and more appealing.

Some pharma companies such as Janssen are introducing patient portals where a patient can login, see their visit schedules, descriptions of upcoming procedures and visits and better understand what will be happening during the trial.  Patients can see a google map showing site location and sign up for visit reminders via text or email.

Sites also want to be more involved with the process. Typically sponsors give the sites they use a rating or quality score based on how the site have performed in the past.  Sites want to know what their scores are and they want to use this data to improve.  Sites want to know how they performed related to other sites.

Some pharma companies have concerns over patients using technology to communicate their clinical trial experience.  They are concerned that patients may report adverse events via social media before they get reported to the FDA.  One patient, Jeri Burtchell decided to blog about her clinical trial experience and potentially unblinded the entire trial.  Jeri has MS.  She participated in the trail and she felt strongly that she knew she was randomized to the investigational product and not the comparator.  She wrote about her experiences as they were happening in her Blog, not realizing the implications of potentially unbinding a study.
Read about it here:

Some recent developments that are changing the clinical trial landscape today:
• In 2013, Pfizer launched the Blue Button Project which enabled patients who participated in clinical trials the opportunity to download their individual clinical trial data.  This data can be used to improve their overall health and wellness and can be shared with their healthcare providers.
• Walgreens is offering services to keep patients in clinical trials. They are offering to gather vital signs, weight, etc. in place of the patient visiting the clinic for these checks.
• Pharma are now developing home based trials, some that involve collecting data via a wearable device or smart phone.

I’m not convinced patients need to be involved in the protocol planning process since in my opinion, it is really a numbers game to make sure we can statistically show safety and efficacy.  But I do see some areas of concern and potential improvement regarding the use of technology.
What are your thoughts?

Sunday, February 9, 2014

Quilting and Technology

Pinwheel baby quiltLovely in LavenderHand quiltedTula PinkDresden PlacematsWonky crosses
eclinical.jen's photostream on Flickr.

I have recently revisited an old hobby.  I used to quilt in the early 1990's, but stopped because having kids and working took over.  Anyway, I am back and both impressed and shocked by the changes related to the hobby of quilting.
Fabric - This has changed significantly, there are now more designer lines of fabric, and the quality is much higher than 20 years ago.  Where before, the fabrics were very little house on the prairie looking, the options of today and beautiful and are more modern looking.
Technology - I can do everything on my 1970's sewing machine that the fancy programmable sewing machines of today can handle.  No technology update needed!
Gear - My gear from 20 years ago such as a mat, rotary cutter and rulers are the same as what is sold today.

The big change is the Internet.  I can buy quality designer fabric online, take classes, watch youtube videos on any technique, interact with other quilters via blogs and message boards, share my projects and see all kinds of other quilt ideas all online for free.  I don't need to go to a quilt shop to attend a class, or ask about techniques.  I can see thousands of quilts online to get ideas about color choices and block types.

I am both saddened by the lack of updates, and a bit happy that technology hasn't taken over this age old tradition.

Tuesday, January 14, 2014

Personal and Career Goals 2014

In my career, I have always had my eye on advancement, moving upward to management with more direct reports and more responsibility.  It is thrilling to be offered opportunities to move up the ladder, make more money, and have more influence within the companies which I have worked.

In my personal life, I have always put an emphasis on volunteering for organizations that I believe in such as the Girl Scouts, FIRST (For Inspiration and Recognition of Science and Robotics), and JDRF (Juvenile Diabetes Research Foundation).  I have been a girl scout leader, a Robotics team coach and mentor and a JDRF board member and volunteer.  Participating at this level has been rewarding to me personally.

I find myself at a stage where I am content with my professional life; I have a rewarding interesting career that gives me flexibility to be available for my children for their schoolwork and extra-curricular activities.

As I look to my future, after college tuition are paid and children are independent, I would like to work a more humanitarian field, but the time is not right now.

I am looking for that ‘next big thing’ to aspire to for the next 5 years.  It seems unambitious to set a goal of contentment, and it can’t quite be a goal if it is already achieved.  Is this the ‘mid-life’ crisis?  Am I stuck?

Thursday, February 7, 2013

Backup -Into the Cloud

Personal backup/storage solutions

Recently I decided it was time to store my important information ‘in the cloud’.  I developed some requirements and did some research and below are my findings.
·         Use with Mac PC, iPad, Android and iPhone

·         Sync my documents folder between all devices

·         Be able to store/backup my iphoto picture library.  (20,000 pictures)

·         Be able to login with my current email address and not have to manage a new one

Google Drive looks cost effective at $60/year for 100GB, but it is linked to a google account.  I don’t like this because I have several google accounts, none of which are my primary email account. I also don’t like that they want the pictures stored in Picassa.  I don’t want to use picassa.
Drop Box meets all my needs, but at $99/year for 100GB it is pricy. 
Microsoft Skydrive has a client for Mac, PC, iphone, ipad and is $50/year for 100GB.

I will be giving Skydrive a test run. 
Please let me know if there is anything additional I should consider.

Tuesday, January 1, 2013

2013 Technology Resolutions

Here are my technology resolutions for 2013:

Stop carrying around a laptop - My last two trips where I carried my laptop bag, I didn't end up using my laptop.  I could do everything with my iPad or Phone.  I need to take the plunge and leave the laptop at home.

Get those pictures backed up - If my computer dies, I have my 20,055 pictures backed up, but I have a feeling that getting them back in a organized usable state won't be as easy as it should be.  If I change the software I'm using for photo management, I want to be able to pull in the photos from a backup.  So, I need to figure this out.  Ideally, I would like my backup to have photos in a standard format, with all the associated metadata (dates, geotags, etc.).  

Find a better way to manage passwords - I have been hesitating using software to manage my passwords because I access sites from a variety of platforms and I doubt I can find any password management software that would work on my Mac, PC, iPhone, Surface, etc.  I try to keep different passwords for different sites, and I'm forced to do this anyway because of the different rules imposed regarding case, special characters, size and numbers.  I keep most passwords in a secret file, but I don't like this solution.  It seams really vulnerable.  

Better manage incoming email - I have about six email accounts. I don't have all email accounts on all devices, for example, I don't have my work email on my iPad, and I don't have any of my personal email on my work laptop. The account I give to my friends I want to check more often than the one I give to those sites that require registration.  I currently check everything often.  I have a friend who cleans out their inbox every day, and automatically flags items from their boss as 'important', and puts a reminder on other emails so they respond in a timely manner.

I happy to say I mastered last years resolution of automating my finances and eliminating my checkbook.   If you have any thoughts on this years tasks, I would love to hear it!

Saturday, December 29, 2012

What's on your Front Page? or Jen's Top iPhone apps of 2012

What's on your Front Page?  
Your iPhone's Front Page that is.

Looking at my iTunes history, I've downloaded 294 apps over the past few years.  Currently, I have about 132 of these on my phone.   I purge the apps I don't use to avoid clutter.  I have the most useful apps on the front page, then I have them loosely organized by category.  I spend a fair amount of time learning the apps features, or trying out different apps until I find the ones I like.  I also often troll the Apps stores featured apps and read lots of app reviews.

I would say I'm a power user.  I hate a sloppy interface.  I like apps with a distinct purpose.  

Below are my favorite apps as of the end of 2012 in alphabetical order:

Flashlight -  I use this about once a week and the simple interface is perfect.  After launching, it acts as a flashlight without having to navigate anything, but can set different colors or use a strobe effect easily.  When a flashlight is needed, it is needed.  This should have come as a standard app.  Apple missed the mark here.

Georific - Geography quiz game that can be played alone or with a friend.  I like the different categories such as Capitals of the World, US Federal Capitals, Music and Entertainment (Who knew Rhianna came from Barbados?).  I also like that there are three levels so when I can't find anything in the Hard setting, I can go back to Easy.  A game that teaches is a total winner for me.

Pageonce - Link all your accounts and Pageonce lets you schedule or make payments, see balances and shows a calendar of when bills are due.  It tracks investments, credit card balances, bank accounts all in once place.  It has some good dashboard views to see where the money is going.  It tells me that I need to cook more and dine out less.

USA Today - This interface is updated fairly often and every time I cringe because I liked the old interface just fine, but I end up agreeing that the updates are good.  This is easy to navigate, gives weather for destinations that I specify.  A big complaint I have with some news readers is that sometimes the stories only come in a 'video' version and I prefer to read my news.  USA Today offers video, but usually also has text for the same story.  If you only read one News site, this is it.

Waze - It's a navigation app, it's a game, and it provides traffic and police alerts while driving.  This app is extremely well done with an excellent user interface.  It integrated with my bluetooth car radio seamlessly proving verbal turn by turn instructions and alerts such as 'Police ahead' or 'accident on shoulder'.  Plus you gain status and points as you provide alerts. This app collects your speed so you can see the average speed on the road ahead of you. All alert content is user provided.  I was disappointed by several traffic apps before finding this.

WordsWithFriends - This totally addicting game has not lost its appeal.  Zanga continues to make it easier to play with links to facebook and twitter added this year.  The updates have been subtle and useful.  I'm glad they haven't tried to change the original look and feel like some games do. I also really like (not related to the Zanga) for competing in daily and monthly tournaments.

Here is my home screen showing my most used apps:

Here are all the apps currently on my phone:

Tray - Phone, Safari, Mail, Calendar
Page 1 <Necessities> - Messages, Photos, Camera, Settings, iTunes, Weather, Music, Facebook, Maps, Pageonce, Passbook, Twitterific, Kindle, Flashlight, Google Maps, Foursquare, Lexeme, Words, Waze, USA Today
Page 2 - Clock, Contacts, Ancestry, Alarm Clock, Newsstand, Garmin onDemand, Starbucks, swacket, Truth or Dare, Podcasts, Find iPhone, Rowmote Pro, iBooks, OLO, QRReader, WordPress, Duilingo, Remote
Page 3 - Geocaching, BigOven, Stitcher, Shazam, Calculator, Compass, Notes, Pandora, Facebook Pages, Beatthetraffic, Food
Page 4 - Stocks, Twitter, LinkedIn, StumbleUpon, Goodreads, Blogger, Skype, YouTube, Google Drive, Lync 2010, Facebook Messenger, TweetCaster, TweetDeck, Google+
Page 5 - <Games> Cut the Rope, Bejeweled 2, Doodle Jump, States and Capitals, Stupid3, SongPop Free, Scramble, WordsWorth, Puzzlejuice, Stack the States, 7 Words, Game Center, Georific, Atari Greatest Hits, Candy Crush
Page 6 - Word Lens, iDisk, Voice Memos, U of Delaware, Nook
Page 7 - <finance> PNC Mobile, Amex, e*trade, LevelUp, myTFS
Page 8 - <travel> OpenTable, UrbanSpoon, Alfred, Local, TV Diner, Zipcar, KAYAK, Trip Tracker, Marriott, Where, Roadside, TripTik, FlightTrack, SundayDrive, MAD Maps, Taplister, Parkmobile, TripAdvisor, Disney
Page 9 - Pic Collage, Lifecards, Postcard, Diptic, Gallery, PhotoTouch, Flickr
Page 10 - Reminders, Videos
Page 11 - AppStore

What are your favorites?  
How are your apps arranged?  
How long to you keep/purge apps that you don't use?

Tuesday, December 18, 2012

Technology udpates at Walt Disney World

As a lover of Disney World and a lover of technology, I am always excited to see updates in unexpected ways at my favorite park.  Below are three items that impressed me, then a bit of a rant about what didn't meet the Disney criteria.  When writing this article and looking for references to the features on Disney’s website, I came up short.  I find it interesting that Disney doesn't promote these things more than they do.

Here is what impressed me:

Star Tours – this ride now offers 54 variations because the ‘show’ is in three sections, and the beginning has two options, the middle has three and the ending has three.  Put them all together to get 54, although we only had to ride 12 times to see each of the 8 videos.  The beauty of this is that more ‘options’ can be added creating a new experience every year or so.  I also liked that the ride featured a member of the audience as the ‘rebel spy’ by showing their ‘wanted’ picture to Darth Vader!

Fastpass+ – Disney is trying out a new fastpass+ system where you can choose what rides you want to ride online ahead of time.  This will save you from having to go to the ride to get a fastpass, which is really a teaser since rides like Arrowsmith’s Rockin Roller Coaster had a 90 minute wait when I was there, so there was no way I was going on without a fastpass, but I had to go all the way to the ride to get that fastpass, then leave.  The new fastpass+ card uses RFID technology, eliminating the paper slips that are used for each ride today. There is more information on the fastpass here.

Disney app – On the Magical Express bus ride from the airport to Disney, you will learn about the new Disney app showing maps, show times and park hours.  This app also shows ride wait times.  We had varied success with this, where it should not always be the same as the wait time listed on the ride, but it was usually in the ball park.  This was helpful when planning where to go once in the park.  One downside is that the wait times have to be ‘unlocked’ by entering the park, which means we couldn't look ahead on the bus or while in our room. 

Here is where I was disappointed:

Room Key - I really like that our room key is also our ticket to the parks, but it would be better if it was also our PhotoPass, Fastpass+ and Disney Attractions+ photo card too so we didn't have to carry all of those around.

Traffic flow - There were a ton of people on scooters at the parks!  I don’t mean any disrespect to people who need these, but loading them on and off the bus takes a long time, and it is problematic in some of the tighter walkways.  I saw a lot of kids riding them while the adults walked.

Beer - Disney is a family destination and therefore not known for its beer, but where there is beer, it was coors and bud. The BigRiver Grille Brewpub is good, but can't somebody make a good Disney Brown to have in the parks?