The starting point – always the patient

Frank van Wijck, science journalist 
 
Ele Visser is handing over his position as chairman of Hartwig Medical Foundation’s Data Access Board (DAB). His guiding principle in discussions about research applications has always been ‘Is this good for the patient?’   
 

During his seven years as chairman of the DAB, Visser was in his element. As a member of the Dutch health insurance fund council (Ziekenfondsraad), he became acquainted with the world of health insurance. As a pharmacy policy officer at NPCF (now the Dutch Patient Federation), he gained knowledge about the healthcare system and its financing. And being active one day a week as a practicing pharmacy employee in the Transvaal Pharmacy in The Hague, he knows the daily practice of patient care. “While dealing with health insurers and the Ministry of Health, Welfare and Sport, you always deal with politics and bureaucracy,” he says. “Working on the ground teaches you how policy and politics relate to the patient.” 

He was not familiar with Hartwig Medical Foundation when he was asked to become a member of the DAB. “The organization had only existed for a short time,” he says. “What I heard about it immediately grabbed my attention. The pharmaceutical industry has been talking about personalized medicine for years. The core of this is to investigate at DNA level whether people respond to medicines and what side effects they may have. Collection of genetic and clinical data from patients forms the basis of understanding this. A role in the DAB fitted in perfectly with my activities in the Patient Academy, my knowledge and advice center for patient organizations, health insurers and healthcare providers. So I said yes. I thought it was an honor.” 

Careful decision making  
 
“The data that patients make available is theirs,” states Visser. “I have always been very careful to ensure that the data is not used improperly or used in a commercial environment. We once received a request from the United States that turned out to come from a commercial start-up. We found out in time, so we didn’t make any data available. In another case, we received a request from China. Our requirement is that parties destroy data after use. In China we have no insight into whether this happens or whether the data is used for other purposes. We had to say no there, too. Even though that’s a pity, because a lot of good research is being done in that country.” 

In Europe we have clear regulations for handling patient data. “With Brexit, the United Kingdom was no longer covered by those regulations,” says Visser. “This has been resolved, but it was a point of discussion for us for a while. We have built in additional safeguards in the United States, because their government has a legal right to inspect data. From our perspective that is undesirable. But you cannot ignore the U.S. if you want to advance research.” 

Awareness  
 
Visser states that in his experience patient interests always come first at Hartwig Medical Foundation. “There are no double or hidden agendas,” he says. “Facilitating research into and improving the treatment of patients are priority. Not just on paper, but also in actions, behavior, culture and awareness. For me this has always been very positive and motivating.. In my experience this is cannot be taken for granted, so compliment to the entire organization.”  
 
The combination of a Scientific Council and the DAB creates a good balance, says Visser. “The Scientific Council examines the scientific side of research applications and the DAB assesses whether it is legally, ethically, and socially justified and responsible for the data to be made available. For me personally, this fits in well with my background in philosophy and ethics. And it is a method that also beautifully reflects the Hippocratic oath: provide value to the patient, do no harm and keep everything you know about the patient confidential. If an organization is aware that this should be the starting point, you have already achieved a lot.” 

Outlook 

“It is essential that this awareness remains the starting point for all that Hartwig Medical Foundation’s does,” says Visser upon his farewell to the DAB. “Hold on to that culture and cherish it,” is his farewell message. And he has another: “Maybe the DAB can gain a little more external exposure and spread awareness on the importance of responsible use of patient data. The annual report would be a good place to give account of the DAB’s work.”

Visser is certain that Mariska Kool will be a good successor as chair of the DAB. “She also has a role in safeguarding the culture that forms the basis of the quality of Hartwig Medical Foundation,” he says.” He also sees a challenge for the DAB in the coming years: “Developments in AI will cause great changes in the use of data and research done with it. This means that the DAB must consider what role AI will play in the use of that data in research.”  
 
Visser himself is moving on to other things. He is a keen cyclist, so the book he received about cycling tours in Europe was a fitting farewell gift when he left the DAB. “We just spent a week cycling in the Vosges and have more tours in mind for the near future,” he says. “I will read that book for inspiration. And I wish Hartwig Medical Foundation good luck in carrying out its mission to improve patient treatment.” 

More information 

• Data Access Board 

• Interview Mariska Kool, DAB 

• Interview Eline Bunnik, DAB – will soon be published 

• Interview Warnyta Minnaard, DAB – will soon be published