Boosting Personalised Medicine – A Patient Perspective

  • Posted on 08.08.2013

Boosting Personalised Medicine – A Patient Perspective


Hylke Sieders

An avid sports fan and survivor


Hockey, sailing, golf, football … As an avid sports fan, I used to enjoy all those kinds of activities with great enthusiasm – until the day I became paralysed. Some of you may remember me from the European MedTech Forum in 2011 or from this video on which I told my story after I made my comeback. For those who don’t: my name is Hylke Sieders, I am 37 and suffered from a sudden spinal cord bleeding between the C2 and C3 vertebrae (in the neck) in 2009 which left me almost entirely paralysed.  Almost, since I am able to stretch my arms and use 3 ½ fingers from my left hand. But I don’t have movement in the rest of my body although my legs are not completely devoid of sensation (current status C5-C6).

Besides undergoing physiotherapy three times a week, I experiment a lot outside rehabilitation centres mainly thanks to my personal trainer. The initial high expectations that I had of rehabilitation centres were perhaps a bit unrealistic. As the treatments that they offer for outpatients are based on self-management, I believe that rehabilitation centres still have quite a few opportunities to increase their effectiveness. Because the rehabilitation support I receive as outpatient is standard, I am forced to find my own personalised approach which brought me to where I am today. However, be that as it may, my current state of rehabilitation remains insufficient. So how am I to proceed?

First of all, what lies at the heart of the rehabilitation process for outpatients like me is personalised care. Given that each spinal cord injury is different, a personalised approach carefully adapted to each patient’s individual situation is critical.

As part of my rehabilitation process, I have purchased a personalised custom-made hand-driven wheelchair which provides me a significant edge. The wheelchair helped my sores disappear and enables more movement in my right arm. But when I receive a standard product, it very often does not live up to expectations.

Take, for instance, my left hand. The muscle strength of the 3 ½ fingers that I can use in this hand remains weak and is not improving as expected. I have tried various devices without success because they could not be adapted to my specific needs. I can only bend my middle finger and I now sometimes use tape to strap the other two fingers to my middle finger, hoping that I can teach them how to make the same movement. So I really hope that a device tailored to my personal needs is soon to be developed as, in all honesty, it is the only one that will be effective.  

A personalised device enables an individualised, hence optimised treatment which, in turn, helps achieve improved response. A case in point besides my wheelchair is the lokomat, a gait therapy device on a treadmill which provides robot-assisted walking. Although the lokomat constitutes a standard product, it seems to have the potential to be a highly efficient tool for spinal cord injury patients as it can conveniently and individually be adjusted to each patient’s abilities through regulating the training parameters. In the Netherlands, because of limitations in the health care reimbursement system, only a limited amount of therapy is feasible. In current practice, this means that physical therapy is only possible for a limited number of therapy sessions (i.e. a maximum of 25% compared to therapy sessions in the U.S.).

Cases like these illustrate the importance of a move from a “general” level to an “individual” one and for no boundaries between countries – a reality that undoubtedly raises a few questions. Do we have the right skillsets and sufficient data for an individualised treatment? How do we transfer research results into a patient’s individual situation? Etc. Within the framework of these concerns, I have decided to set up a foundation dedicated to spinal cord research.

The foundation’s aim is to contribute to the development of innovative personalised products that improve the quality of life of individuals living with a spinal cord injury. To achieve this, I need to get in contact with medtech manufacturers who will hopefully read this blog and get in touch with me.

The idea of a foundation is supported by many other spinal cord injury patients whom I have met. Being confined to a wheelchair, I believe that we can provide useful ideas for developing medical devices that meet patients’ individual needs, enable a better assessment of their rehabilitation course, and ergo increase their quality of life.

The production of personalised products will probably trigger higher costs than the production of standard devices. But I believe that personalised healthcare can be cost-effective as the patient’s situation will improve over time and thus require less products and counselling. As for the issue of reimbursement, more collaboration between the medtech industry and insurance companies should take place because they both possess enormous amounts of data that are not necessarily shared.

Having worked in the insurance industry myself for a total of 12 years, I am sure that joint action between the medtech and insurance industry is an opportune initiative and entirely feasible from a technical point of view. So I really hope that both industries will soon realise the contribution they can make together, recognise the importance and practicality of it – and seize the initiative.

I look forward to continuing the dialogue with industry and patients, and am convinced that together we can come up with personalised solutions that are cost-effective and increase the quality of life. What more can you wish for.

 – Hylke Sieders, an avid sports fan and survivor

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