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!

The Rehabilition Center

kroketThe reception in the rehab center felt like a warm bath. Hubby and I were greeted by a male nurse named Brother Bernhard, who apologized that the wheelchair mechanic wasn’t available that day. He informed me that I would have to make do with a general wheelchair until after the weekend. This didn’t really bother me since no one knew I was coming here until very recently, and I knew it took time to adequately prepare for a patient’s arrival. Also, I could still move around in the general wheelchair — albeit very slowly.
I was wheeled to the room I’d be staying in. It was a double-occupancy with a sink situated between the beds and curtains that could be closed around the beds for privacy. The previous room’s occupant had just left the rehab center, so I would have the room to myself for a few days. The time and quiet to reflect on everything was going to be appreciated.
Brother Bernhard arrived with the paperwork. He was very precise and detail oriented throughout the procedure, and he asked both my husband and me all kinds of questions. He was meticulous with writing down our responses to his questions.
While taking my blood pressure, Brother Bernhard asked me what I wanted to eat for lunch.
“A cheese sandwich and a cup of coffee would be nice,” I replied.
“Would you like to have a croquette as well?” he asked.
That was a really nice surprise. Lunch turned out to be one of the best I’ve had in a while. Wonderful.
I was tired from the ride to the rehab center and lunch afterwards. I was taken back to my room and helped into my bed.
“You can go to sleep now,” Brother Bernhard said. “Your husband and I can organize your closet and the registration.”
A red push bubble was attached to my bed as a life buoy. If I ever needed help with something, I could press it and people would come to assist me. Rails surrounded the bed, which made me glad because I worried that my paralyzed side would fall out of the bed without them.
Later, I discovered the lay-out of the rehab center, which was quite simple. During the day nurses came in and told me their names and what their responsibilities were. They were all incredibly nice and understanding; although, immediately after we met I forgot their names, what they looked like and what we talked about. Nobody cared about that, though, because they were used to people with faulty brains. Memory loss was one of the many symptoms they witnessed here.
Suddenly I heard loud cries: “I NEED TO SHIT, DAMNIT!” I was shocked and surprised. Then a nurse came along, and I heard him talking quietly to the patient in need. Lack of impulse control is a symptom of brain diseases, I learned later. Also, I heard loud whining and crying throughout the night. It seemed that patients who had a terrible accident were reliving their experiences. It must be terrible to go through these experiences once again. Terrible for the patient, and terrible for his roommates as well. In some rooms there were 4 patients in one room. It seemed a lot to me, but obviously there wasn’t any other way. Later I noticed that the staff tried their best to get the noisy patients in a separate room, but there wasn’t always one available.

Transfer issues

fax rip

The Rehab Center:
The rehab specialist arrived on Thursday to run some tests and ask some questions:

Him:                                                                                             Me:
Can you stand?                                                                     Only briefly
Raise your leg?                                                                      No
Fetch something with your left hand?                     No
Do anything with your left-hand side?                    Raise one finger 3mm

“I propose to have you admitted to the rehab center,” he told me with a smile. “You will improve more there than anywhere else.”
That sounded good to me. I knew I had a lot to work on because I couldn’t do anything in my current state.
“It’s hard work, though, in a rehab center,” he warned me, which I thought was a peculiar remark. As a CVA patient, everything I did was hard work. Just getting out of bed was more difficult for me than mountain climbing would be for you. I needed the agility of an acrobat just to put my pants on in the morning.
Later on I learned from other patients at the rehab center that it wasn’t made available to every CVA patient. One gentleman, who was my age and paralyzed on the left side as well, was first sent to an old-folks home. He lived there like a plant for three months before the doctors acknowledged that he’d progress more at the rehab center. I considered myself lucky to be sent directly there, and I thanked the universe that an available space was open for me at that time.
Another lady came to visit me to ask whether I would participate in the Explicit Research Project. She explained how its research would measure the effectiveness of different treatments on young CVA patients. I knew how hard it was to get appropriate candidates for research, so I was happy to oblige. The lady provided me with a leaflet, and she said she would follow up at the rehab center.
The doctor in training stopped by. She was working hard to have my transfer file ready before I left the next day due to its importance. She told me to stop by the secretary before I left and ask for my file if it wasn’t brought to me beforehand.
The next morning two paramedics were waiting to take me with them. I was rolled onto a stretcher and wrapped up in blankets before being strapped to it. Suddenly, I realized I didn’t have my transfer file yet, and I told the paramedics that we needed to get it from the secretary before we left. They agreed.
The secretary was enjoying a cup of coffee when we showed up. When I asked her for my file, she pretended to look around her desk briefly, then told me she couldn’t find it.
“It’s not a problem,” she assured me. “We will fax your papers to the rehab center.”
I couldn’t believe what I was hearing. Faxing? What century did we live in? And who spread the myth that information via fax was confidential and safer than email?
I repeated that the doctor in training had moved heaven and earth to have my transfer file ready so that I could take it with me. I wanted her to retrieve it for me now. The secretary pretended to put forth another fake effort to look for my file. Her body language spoke louder than words, telling me she didn’t want to find the file. This was her territory, and she was in charge. Period.
I realized I wouldn’t win this battle and told the paramedics we could go. Just when we were past the doors, I heard high heels clicking in the hallway. It was the doctor in training who came by to see if I got my transfer file. When I told her I didn’t get it despite multiple requests, she hurried back and plucked my file from a pile on the top of the secretary’s desk. If looks could kill, the secretary would have been dead by now.
“Here you are,” the doctor told me as she passed me the file. “This way you’ll have all the information you’ll need in the rehab center.”
The paramedics saw the entire episode, but they kept a neutral expression on their faces. They whisked me off to the ambulance and loaded me inside. One paramedic sat next to me as we travelled, and I asked his opinion of what he just witnessed.
“Well,” he replied, “patient transfers usually have flaws, but this is a big one. One cannot change the system by themselves.”
The Large Organization is back.
We discussed what we do, and it turned out this paramedic was also a trainer in healthcare. I told him about my plans to share my experiences with managers and directors in healthcare in order to get the opportunity to improve things — in this hospital, for instance. He thought that was a great idea, and when we arrived at the rehab center (in record speed), we exchanged contact information just in case. Hubby always carried some of my business cards for networking instances like these. The next day we found each other on Linkedin.

The importance of excercise

Excercise guide

It is quite important to get up and start excercising after a stroke, instead of staying in bed and do nothing. It is quite hard to do so, as everything is hard and takes tons of energy. Muscles don’t do what you want them to, and even the smallest bit of excercise makes you feel  you have run a marathon.

One of the professionals visiting me in the hospital (I do not remember who it was and what her role was) left me an excercise guide. It is recently developed, and quite self explanatory, because of the pictures in it. You find the information on this booklet here:

Excercise guide for stroke patients

The booklet is quite clear, and there are tips for family and others on how to help you. I tried to stimulate my arm before I got this  guide, but now I have even more excercises at hand, which have proven to be effective. Another advantage is that I can do them on my own, whenever I want, without a therapist.

Later,  in the rehab center,  I learn that the book and the approach in it is quite new. I consider myself lucky that I can try this approach already now, and I start immediately with the excercises. I visualize the ones I am unable to perform in practice, as visualization helps your brain to form the links needed to do the excercises later. When you are unable to do something, you just need to visualize as detailed as possible how you would do it.

I truly hope that I can help someone with this guide and the information. Excercise is vital for rehabilitation!


During my time in the world of Biotech, I got acquainted with GMP (Good Manufacturing Practices). These practices consisted of procedures that, if followed precisely, would ensure minimal mistakes and optimal work efficiency. Mistakes in these procedures could cost millions of dollars — or worse, human lives.
One of GMP’s principles was a “Single Point of Entry.” Basically, this meant that all data would be collected only once at the outset, then forwarded to all the parties who would need it.
The most optimum means to effectuate this concept in a hospital setting would be for the patient to enter his or her personal information (name, address, insurance, etc) into the system, then the administration officer or nurse would verify its veracity by comparison with a passport and insurance card. The system itself would be programmed to automatically pass the information on to all doctors, nurses, and other personnel that had need of it.
In the Emergency room the staff seemed to take the opposite of GMP’s approach. My husband had to give my information to the doctor; then, later, he had to re-give it to a nurse. Once we entered the Medium-Care unit at the Neurology ward, my husband was once again asked to provide my date “just to be safe.” I must admit that their lack of communication did not make me feel safe; on the contrary, it made me feel worried.
When I was moved to the regular ward in Neurology, I noticed a large blue binder with my name on it attached to my bed. I wouldn’t be me if I didn’t check its contents. To my astonishment, I saw the staff had a completely different General Practitioner listed as my doctor. The listed doctor’s name wasn’t even close to my GP’s name, nor did he live in the same area of town as me.
This sparked an intense desire to have multiple questions answered, and I wanted those questions answered NOW. Who was getting the information of my whereabouts? Was my medical information and status being forwarded to the proper people? The secretary was not in the building, and none of the nurses I talked to were very helpful.
In Holland there was a lot of hassle about the security of electronic medical data being breached and made available to the public. There was more emphasis on people’s privacy than on accuracy and efficiency. I appreciate the fact that my doctors worry about my digital privacy; however, I would appreciate more the administrative security of The Large Organization (TLO) making sure that these simple mistakes did not occur.

My husband called our GP, and she wasn’t even aware of my current situation. It took over three weeks before she got a perfunctory letter with no informative value letting her know I had been in the hospital with a CVA and was now in a rehab center. In the city of The Hague, 20 km from my hometown, the GPs are informed within a day by email when something happens to one of their patients.
From that moment on I made sure to check everything that was written about me both on paper and in the computer.
To be continued!