How to recruit patients for clinical trials?


Last week I was a patient participant at the #CVCT18 – The conference for Cardio Vascular Clinical Trialists. It was very interesting and we did have a lot of discussions and conversations. One question was about the best way to recruit a diverse group of trial patients.

One cardiologist made a convincing argument. She said that patients need someone they can trust when it comes to participating. That was why she always asked the patients she wanted to include herself.

“When you participate, I am going to adopt you. You will become my family. Nobody will do anything to you without discussing with me first. And you will have a team on your side. Your nurses will be your guardian angels. They will support you, monitor you, protect you and contact me when things are not going the way they should. Would you like to participate?”

It was a very sincere plea and if I were her patient I would join immediately.

Also there was a discussion about online recruitment for trials. That way you can recruit patients you otherwise would not have seen. Yet how will patients trust the trial when they have no personal connection to the doctor?

I learned that – no matter whether you are in the control group or the experimental group – your medical care during a trial is better than regular medical care, according to the doctors who presented this statement.

It was an interesting session with patients, doctors, the FDA and the industry. An open discussion. I really was happy I was able to participate.

Thanks to #Faied Zannad for inviting me!


How is your mom?


One of the most hated questions by my daughters. They want to be recognized for who they are, and not be seen as “the kid with the mother in a wheelchair”.

So take that into consideration when you address a familymember of a handicapped person. The biggest mistakes to make are when you are saying: “I wish I could take over the handicap of your mother”. That may give you a fuzzy feeling, but we know it isn’t possible and it makes my daughters angry.

Another one is to assume I cannot do anything and I am not right in the head. Yes, I have a handicap, but I am still me. I love cruel jokes, I can talk, laugh, cry and cuddle, and I am still  me. So when you talk about me as “the woman in her little cart” it is demeaning and disrespectful. Most importantly it is hurtful to my kids. I can still crush your toes with my little card or blatantly say something inappropriate to have my little revenge. But do not hurt my kids!

Do not attribute my kid’s life’s choices to my handicap. They are smart young women who are inventing their life, partly based on the experiences with my handicap but mostly because they have unique talents and want to find their own way in the world.

I hope this column has made you think. I know most things are said well meant but sometimes they hurt others deeply. We don’t need more hurtful feelings. Thanks for your consideration.


Lessons learned


One of the things that is done in companies is to evaluate projects to discover the “lessons learned”. I have learned that it is not possible for me to keep up two blogs and I had to let my english blog lay dormant for a (long) whilee. I do apologize to my english speaking friends and colleagues and I hope to make it up to you by writing an occasional post in English, albeit not as often as the original blog.
It has been 4 years now since my stroke. There are definately some lessons to be learned here.
– Keep up with the medical information you need to know to recognize serious illnesses. I use the site of dr. Weil and dr. Christiane Northrup as important sources of information, together with a big book of medical information for the family to determine whether you have something serious and what you can do about it. A book is always available, not dependent on internet, and has checklists and pictures to show you what to do. Other programs may be of interest  as well. In this program is the role and risk of pre-eclampsia discussed; if the doctors’ post had taken that into account they would have searched for stroke clues sooner. A book is always available, not dependent on internet, and has checklists and pictures to show you what to do.
– Make sure you have a copy of your medication and medical history updated and with you. It is difficult to remember when you arrive at the hospital what you had and when and what they gave you for it.
– Make sure there is someone with you who can drive you to the doctor or to the hospital. This someone is also the one to record the actions being taken, and meds being given. It is not natural in every hospital to give the patient a clear insight in what is recommended and given to you.
– Make sure you get a paper copy of everything they write about you.
– Check your patient file or have it checked and ask a copy
– Inform your GP yourself or have someone inform them. Information does not always reach your GP.
– Give your pharmacist permission to share data with the hospital about medication.
– Have someone check whether all information is correct and whether it has reached the correct persons. This is NOT a given, many mistakes are still made everyday.
– Have someone check alternative treatments of what you have. Sometimes you are not told all the options.
– Once you are out of the first critical phase, sit down with your GP and evaluate what went well and what could be improved. Also agree on a course of action for the future. I see my doctor every 3-4 months for a bloodpressure check and I gather all non urgent questions for that appointment.
– Do not wait to go to your GP when you feel something is wrong. It is better to be treated by your GP then by an emergency room doctor who does not know you.
– Accept that mistakes can happen and move on with your life. Mistakes were made in my case, but there is no use spoiling my life and that of my family by moaning around. Nobody gets better from that. Be kind to doctors who acknowledge a mistake has been made. Be tenacious to doctors who do not acknowledge there has been made a mistake and make sure it is not sent to “the large organization”
– Do all that you can to make sure mistakes are prevented and lessons learned. Share your story. Write a blog. Go to the media if you have the energy for it. Advise others on how to treat a patient.

And don’t forget to enjoy the fact that you are alive. Life can be over before you know it , so it is best to enjoy every minute!

Twitterfest (contd)

So I had to call the customer service. Calling is quite difficult for me as I cannot see the person and have to rely on auditory information, which I tend to forget. After my stroke I have learned to rely on my visual memory. Calling without a concall programme or chat is therefore a nightmare.

I called Orbitz and was put on hold. The minutes were ticking away so I decided to stir things a little by sending some tweets into the world. THey tell the story:

@ Development ‏@Atdevelopment  16h16 hours ago
#Orbitz: Lousy service for the #disabled. On the phone for 72 minutes #nowsolution #lousyservice

@ Development ‏@Atdevelopment  17h17 hours ago
Thanks @KLM for responding to my #tweets. Please #confirm you have seen my #DM !
0 retweets0 favorites

@ Development ‏@Atdevelopment  17h17 hours ago
#help the #handicapped @KLM and @OrbitzCareTeam #scootmobile #waiting #Hersenstichting @Consumentenbond

@ Development ‏@Atdevelopment  18h18 hours ago
@ Orbitz: #Skype lost the connection. Now I can start #alloveragain! #customerservice #telephone #international #terrible
#Orbitz: happy to help you. #youdidnt
0 retweets0 favorites18h18 hours ago

#KLM and #Orbitz: a simple form to request #transport for a #scootmobile will do. #savethehassle #energydrain #badservice #cvapatient

@ Development ‏@Atdevelopment  18h18 hours ago
#hersenstichting and #americanbraininjuryassociation Can you look into disability assistance for #CVApatients by airlines? #KLM #Orbitz

@ Development ‏@Atdevelopment  18h18 hours ago
#Orbitz #international #Customerservice 23 minutes and counting….
@ Development ‏@Atdevelopment  18h18 hours ago

#KLM and #ORBITZ only refer to each other when requesting transport for my #scootmobile. HELP! #evenmoredisabled #badservice

THey were picked up within the hour and retweeted by other travel bloggers and tweets. KLM was the first to respond, transferring the discussion to direct message.

In the meantime I finally got hold of an Orbitz representative and I pleaded my case.
“Hello, I need my scootmobile transported and it needs to be requested by Orbitz to the airline. Can you do that for me?”

“Thank you for calling Orbitz! We are happy to help you. However in this case you have to contact the airline yourself/”
“THe airline tells me you have to tell them, they won’t accept a request from me. Since I had a stroke and I am handicapped, I request your assistance”
“I have no possibillity to do that for you”
I was losing my patience and my energy. I started yelling that I had a ******* stroke and that I was given the runaround, and did they know how much energy this was costing me?
“You will be transferred to a supervisor”
“Hello, this is the supervisor. (strong asian accent). How can I help? (She didn’t sound like she wanted to). “I NEED SOMEONE TO TELL THE AIRLINE THAT I NEED HELP FOR THE BOOKING OF THE TRANSFER OF MY SCOOTMOBILE!”
“We don’t do that, you have to do that yourself” It was like pulling teeth. Gradually she budged and said she probably would have to try but no guarantees were possible.
Then she started to ask about the battery. I told her I had all the tech specs in a file for you, so I could mail it to her. “We don’t accept email, mam”
I started to yell at her and asked for her name. I couldn’t hear it probably and asked her to spell it. Still difficult to hear, because of her Asian accent. I decided to give up for now, and try another way, and ended the conversation.

In the meantime my tweets were picked up by KLM, and they referred me to Delta Airlines Customer Service in The Netherlands, which was run by KLM.
My twitterfeed went on:
@ Development ‏@Atdevelopment Jul 1
Twitterfest and scootmobile via @Atdevelopment
View summary 0 retweets 0 favorites

@ Development ‏@Atdevelopment Jun 30
@Consumentenbond @KLM Heb vandaag een mail gekregen die me naar #Delta verwijst. Heb hun gebeld en het lijkt nu geregeld
View conversation 0 retweets 0 favorites

@ Development ‏@Atdevelopment Jun 30
Twitterfest and scootmobile via @Atdevelopment
View summary 0 retweets 0 favorites
Reply Retweet Favorite View Tweet activity
@ Development ‏@Atdevelopment Jun 30
Twitterfest and scootmobile via @Atdevelopment @Orbitz
#badservice #mistreatment #disabled #cvapatient

@ Development ‏@Atdevelopment Jun 30
Twitterfest and scootmobile

@ Development ‏@Atdevelopment Jun 29
@KLM Please #help me to get my #scootmobile transported! I had #noreply to my #DM. Took a while to figure it out. #disability #stroke
0 retweets 0 favorites

@ Development ‏@Atdevelopment Jun 29
#Orbitz: Lousy service for the #disabled. On the phone for 72 minutes #nowsolution #lousyservice
0 retweets 0 favorites
Reply Retweet Favorite View Tweet activity
@ Development ‏@Atdevelopment Jun 29
@KLM na het sturen van een DM blijft het eindeloos stil! #Scootmobile #caught between #Orbitz and #KLM
0 retweets 0 favorites

@ Development ‏@Atdevelopment Jun 29
@KLM Please confirm you have read my Direct message. I managed to send it.
View conversation 0 retweets 0 favorites

@ Development ‏@Atdevelopment Jun 29
Thanks @KLM for responding to my #tweets. Please #confirm you have seen my #DM !

Twitterfest and scootmobile

One of the slogans of internettravelcompany Orbitz, is “Get it. Use it”. I would like to propose a change to that slogan, being “I want to use it. Do you get it?” The answer to that is a resounding NO.
I had booked my tickets for the summer vacation at Orbitz and that went smooth – except for one thing: there was no way I could express my need for the transport of my scootmobile.

I know that it is possible to bring a scootmobile along – however the airline needs to give permission upfront and it needs to check that your scootmobile is in line with the rules and regulations for a flight.

Then my Quest for Assistance started.

At first I decided to mail KLM as I was under the impression they would be the operators of this flight. I mailed them but it took forever to get an answer. They told me I had to get in touch with Orbitz, as they would not handle requests directly from travellers themselves. So i did manage to locate Orbitz Cucrtomer Service Chat, and the following discussion took off:

Keren: Hi, my name is Keren. How may I help you? 
cvapatient: Hello, 
 Keren: Hi, 
cvapatient: I need assistance because I am disabled and have a scootmobile 
cvapatient: the transport of the scootmobile needs to be requested by Orbitz to the KLM 
cvapatient: So that is what I am asking of you 
cvapatient: I do have a declaration from my doctor that it is needed 
cvapatient: and I have flown with this scootmobile before 
 Keren: I’m happy to assist you today! Let me check your reservation, just for security reasons may I please have your billing zip code used to book in? 
cvapatient: My ZIP is *****
cvapatient: and the billing code is 
cvapatient: ***** 
cvapatient: (KLM) 
 Keren: Thank you! 
cvapatient: It is a small scootmobile – GOGO traveller PRIDE. It meets all the requirements 
 Keren: Ann: I was checking the options we have and we only have the option to request wheelchair assistance with the airline in this case will be necessary to request it with the airline directly. 
cvapatient: KLM does not accept that and refers me to you. I don’t need assistance in the aircraft though- I need their cooperation in the transport of my traveller scootmobile 
cvapatient: I have arranged the assistance to and fro the aircraft. 
cvapatient: But they need to know I come with a portable scootmobile as it needs to be stored in a special way. 
 Keren: I understand that you need, but we do not have the option to do. 
cvapatient: And I need them to allow me to get into the aircraft first with the other disabled passenges so I can walk slowly to my seat. 
cvapatient: KLM refuses that request directly from me and maintain it should go through Orbitz 
cvapatient: So now I am stuck.
 Keren: I suggest you to contact us at 1-877-808-6077 and our team will contact the airline on your behalf.

cvapatient: It would have saved me a lot of scarce energy 
cvapatient: Will call them now- Tx for your ‘help’ 

I was caught in the middle!
To be continued

The ultrasound

The Ultrasound

As mentioned earlier in this blog, I have to go for a “trans esophageal ultrasound”, or better said “an ultrasound of my heart through my esophagus”. According to the physician assistant this was urgent. He mentioned I would get an invitation for the ultrasound under anesthesia in the mail. And indeed, two days after seeing the physician assistant, I received a letter for an ultrasound in 7 weeks! I wonder what the reason is for the urgency: the fact that there was an opening in the schedule, or if it is really urgent that I get the ultrasound? I discuss this with the rehabilitation physician of the rehabilitation center. She listens well and understands my fear for this examination. She will call the cardiologist herself to check the background for this examination. Before I had a chance to speak to the physician again, I receive another letter in the mail with the new date for the examination: two days later!

The secretary arranges a wheelchair bus and I decide to go with the inevitable flow of things. We need to be there at 11:00 AM and we arrive ahead of time. I am called in by a foreign lady who seems a bit stressed. “You can undress here and then you can go through that door.” Taught by experience, I say “Hey, I’d like to learn what we will be doing.” “Well, first you’ll have an ECG, and then we’ll do an ultrasound.” “Under general anesthesia?” I ask. “‘No, you will receive a local anesthetic.” ”We agreed that I’d get an ultrasound under general anesthesia.”
“Well, that is not possible this morning”, she says in a snappy way.

My head is sort of short circuiting. “That is not possible this morning? Not possible? We discussed and agreed on this and changed the arrangements to today for this particular reason”. My rehabilitation physician has called to ensure I get general anesthetics!”
I cry and snivel simultaneously. Rarely have I felt so angry, powerless and at the mercy of the “monster of the Great Organization”. Or “The Big Incompetence”, which is what I increasingly wonder. No wonder that health care gets more expensive. But the causes for that are not what the media tells you.

The lady casts one more look and says “wait here” and leaves the room. My hubby helps me back into my wheelchair. In the meantime, I had turned into a great deal of misery. “I do not need this” the Americans would say. After fifteen minutes (I timed it) the lady appears, slightly heated, back into the room. I have the impression that she has ransacked the whole department. The miracle has happened: I get the examination under general anesthetic, she says. Only that is not possible now. It has to wait till this afternoon at 15:00. And had I heard that I had to fast for this?

None of the letters we have received from the hospital indicated that I had to fast for this examination. We looked at this with the nurses upon return. Dug through all the letters, but nothing about fasting. Fortunately, the ultrasound is in the afternoon and I ate just one sandwich in the morning. If I don’t eat any more from now on, then that should be fine.

The taxi’s schedule is now completely messed up. The wheelchair taxi must be booked long in advance. My husband decides that – despite the drizzle and no jacket – we’ll go for a walk to the rehabilitation center so that I can get some rest. That works, though it is bumpier than I had realized in advance. At the rehabilitation center the nurses are concerned and outraged regarding the way things are going. What are the costs for this not yet performed examination?

– 1 wheelchair taxi
– 1 hour time of the research assistant (with tasks that she doesn’t have to do, namely, scheduling an (urgent) appointment)
– 1 hour examination time for a patient
– Rescheduling of the examination for the afternoon
– Time for me and my husband
– A substantial drop in patient satisfaction.

It all could have been easily prevented.

Research patient

Ever since I had my stroke, I have been offering myself as a guinea pig for scientific research. From day 1 I have given blood to analyze and been a test patient for students. In the rehab center I also participated in several research studies. This was quite satisfying as I felt at least someone was gaining some benefits from my disease and situation. It was something I could do, and only stroke patients could do. It made me feel useful. All this research had one theme in common: the effort for the patient was way too much. It took too long, and the researchers somehow hadn’t taken that into account,. Everything longer than 30-60 minutes (depending on the phase of the rehab a patient is in) is too much. Even from 30-60 minutes research time, a patient needs at least a day to recover. Last week I participated in the NEURAS research in the LUMC. I was invited at 9:30. a good time to start. First I had to go through the standard tests, used in rehab, to evaluate the level of the patient. This consisted of a questionnaire and several excercises, where little cubes had to be lifted and glasses of water had to be poored with my bad hand. @neuras3 This took about 30 minutes. Then I was offered a cup of coffee (very important to keep your patients watered and fed), before I had to be strapped into the next research setting. I was connected to a robot and a computer. I had to ”drive” a virtual car while the robot did several things to my arm, in order to detect spasms and reactions of my muscles. I had to drive the car over different roads, and I could feel in the robot the effect of the structure of the road. While driving, I had to collect coins that were scattered over the road. It was a fun game. After that, tasks were added. I had to listen to a voice saying “high” and “low” at both a high and low tone. Sometimes the height of the tone did not correspond with the meaning. It was extremely difficult for me to focus on the auditory task while driving the car and trying to collect coins. In fact, I was not very good at it. Then an added difficulty was introduced. Some of the coins suddenly changed into different symbols, and those had to be avoided. It was at this task that my brain started to melt. I couldn’t do it, so my body decided to skip the ”high-low” task altogether,  in order to leave some brainpower for the other tasks. @neuras2After an hour in total I announced I was  getting tired. This was something I learned from my ergotherapist: at the first sign of tiredness, say something and prepare yourself to stop. People listened to what I was saying but wanted to finish this part of the research. I could relate to that, so I pushed myself to continue, in order to finish most of the research that was planned. After 1,5 hour I was getting exhausted. I announced that I needed to stop very soon, as I was almost collapsing on the spot. The researchers tried to motivate me to continue. What if I took a lunchbreak and continued afterwards? I told them I would be happy to  return another day, but I could not continue that day. This caused some commotion on the researchers side, but we agreed to continue two weeks later. When I came home, I went straight to bed, slept for 3 hours, and had dinner. After dinner I fell asleep and slept until the next morning. The second day I stayed in bed while sleeping on and off. I just didn’t have the energy to walk. Today is the third day. I am out of bed, and will go to fitness in the afternoon. My husband stressed that I should make this known to anybody in research working with CVA patients (and maybe this applies to other neurological diseases as well). Everything that takes more than 1 hour is too long for a CVA patient. And even an hour may be too long, depending on the task ahead and the phase of recovery a patient is in. Researchers and professors, please take this into account when designing research. Go and visit a rehab center. Interview patients, nurses and therapists. They can enlighten you about the timespan you can use to conduct research.