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Putting the patient at the centre of clinical trials (Guest blog)

ramona kanters

Patients look at healthcare from a different perspective to healthcare professionals. They possess specific experience and expertise that is unique and relates to their personal situation, treatment, disease and recovery. This means that patients are given the opportunity to introduce knowledge and experience that contributes to improvements in healthcare. A patient may be an individual but may also belong to a group of patients or patient representatives, including parents or other family members.

My experience is that successful participation begins with a good match between the trinity: the patient; the doctor (researchers); and the pharmaceutical industry. Sometimes the match is created by itself and the process works easily. But more often it’s a matter of scanning and gauging to ensure all sides click and a productive collaboration is achieved.

What we need to understand is that, by deploying the trinity effectively, the care provided will be improved!

Unfortunately, there are still people who underestimate the patient’s contribution or look at it with a restricted view. We can also learn from this, but by publishing the positive experiences with patient participation, we can also make this group understand the enormous power of patient participation, which will also change their minds so that patient engagement in the near future will be encouraged and appreciated.

Here are some good reasons for placing the patient at the centre and giving them a voice in clinical trials:

  1. There are surprising questions and topics addressed:

Patients are those who have to live with their illness and the consequences of this in, for example, daily life. As a result, they can introduce many topics, which would otherwise go unnoticed. They increase the quality of, among other things, research, because they are able, for example, to formulate more explicitly the questionnaires and to make them more consistent with the patient’s living environment.

  1. Research gained more social value:

Because patients co-decide on which research is being carrying out, research is no longer restricted to researchers and professionals alone. The research is also particularly important for the patients themselves. It answers their questions and needs and addresses their problems. This legitimises the research and increases its social impact.

  1. More likely interpretations and conclusions are correct:

By allowing patients to think over the data from research, over time, researchers discover issues they may have once considered less important. From a patient perspective, they can begin to analyse, interpret and help to get the right conclusions.

The progress made by patient participation is huge; building on it is a must!

Here are some tips to ensure the progress of patient involvement:

  • Publish your experiences with patient participation, so everyone can read about them.
  • View participation as a continuous interaction.
  • Lead doctors / researchers in patient participation.
  • Be alert to the effects of language; speak in a simple language so that everyone understands what you mean.
  • Develop and cherish the experience and knowledge.
  • Take into account at all times the needs and wishes of the participating patient! They are the key to a successful clinical trial.

Patient participation is relatively new. As in any new field, space is needed to discover what works and what does not. Join in this adventure as a trinity! Listen closely to everyone who is engaged in the setting up and executing of the clinical trial.

It is important to discover together what the opportunities and the solutions are and approach this process as equal partners. Offer clear frameworks and make clear arrangements, but also take the liberty to further develop patient participation. Experiment and learn by reflecting!

Note: Always involve the patient in setting up the trial and encourage them to remain involved during the entire process! Also, ensure that all parties share their expectations regarding the collaboration and that these expectations are known in advance so that no one is surprised during the execution of the clinical trial.

What is also a major additional benefit to engaging the patient, among other things, in clinical trials, is to ensure that the patient really has a voice and actually will be heard. This transports the patient from the reserve bank to a place in the field. Undoubtedly, this will have a positive effect on the course of her / his illness!

Patient engagement is THE tool to improve healthcare!

About the author

Ramona Kanters is a thirty-nine year old (mother of two) who was diagnosed with Systematic Sclerosis at the age of 32. (Systematic Sclerosis is a rare autoimmune decease that occurs in one out of 10.000 people. It involves the thickening and scarring of the skin, muscles, joints and organs.)

After a year of extensive chemotherapy and a stem cell transplantation (that saved her life) she decided to devote herself to the support and accompaniment of fellow patients and their partners. For this purpose she established a foundation to enhance the awareness concerning this grave but rare disease. She provides lectures, workshops and counselling sessions at home and abroad, and has recently published a care report in which the system of care surrounding Systemic Sclerosis is analysed, which has been internationally published.

During her activities Ramona has found that it is of crucial importance to involve patient in their own care. She advocates that when patients, physicians and pharmaceutical companies will start to work as a unity, care can be greatly optimized. Ramona: ‘Give patients a voice, let doctors and those working in pharmaceutics see the person behind the patient and let the patient see the real person behind the physician. This will make an enormous difference in their wellbeing’.

In 2012 she founded OPEN. OPEN is a company which forms the link between healthcare institutions, pharmaceutical companies and patients. We are the partner for pharmaceutical companies and healthcare institutions who have questions about patient experience to improve their services. OPEN helps you to look at your product or organization through the eyes of a patient.

OPEN believes that only healthcare institutions and pharmaceutical companies who are close to the patient, are able to achieve maximum results for “their” patient. We deliver tailor-made solutions. Your need for information is central for us.

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