When it comes to developing products in healthcare, the industry should take a look at the commercial sector to learn about how to implement and develop products.
In healthcare researches, the experiences and wishes of the patients are rarely the main focus. The research itself is good for the patients, but the patient experiences are vital to understand the reality. In not using the experiences of patients, we miss vital information which is fundamental in the development of better care. This especially goes for the development of digital care products that patients need to use in their home replacing care that has been given in the hospital.
The importance of research in healthcare
Healthcare and research are strongly connected, a relationship of trial and error, testing results and going back to the drawing board, starting over and continuing. It is the same in the private sector: Coca-Cola also does constant research to develop new products. They analyse the wishes, preferences of their (potential) customers. In that way, they can improve their products so more people will buy it.
When I look at tech in healthcare, too often products are just developed because someone thought it was a good idea. Then in the daily practice the product is not used, or is not used for what it is was intended. Healthcare has historically been very supply-oriented. As a patient, it is hard to make a choice based on the things that you find important in the way healthcare is provided to you.
View from The Netherlands on how to work with direct patient experiences
That’s why at The Netherlands Patient Federation we have created several products that can help people make that decision. A website where people can share their experiences with their medical professional, so others can take the experiences of other patients into account when making a decision about which GP to choose for example. The experiences that people share on this website is also being used by the Dutch Healthcare and Youthcare Inspectorate. We connect patients to share their experiences in healthcare directly with policymakers, parliamentarians and ministers. We create programmes about how you can apply Shared Decision making on a daily basis and we have tool that elder citizens can use to indicate which issues they encounter in the long term care at home. We also have a website where we give information regarding eHealth products and make patients aware of the potential benefits and downsides.
The best example about how we managed to prioritise a patient centric approach in healthcare IT is the programme called MedMij (in English: https://www.medmij.nl/afsprakenstelsel/), initiated by The Netherlands Patientfederation. This programme has the goal to give every citizen the possibility to collect their health data on one online environment in a so called Personal Health Environment (PHE). A personal health environment is a lifelong tool to collect, manage and share health data, so a person can be in charge of his own health information. This is done by creating and maintaining a framework of agreements and standards for the exchange of health data from a professional to a person’s PHE.
The programme was initiated by The Netherlands Patientfederation, but is now a cooperation between all the stakeholders in healthcare. The MedMij framework is the standard in The Netherlands for the exchange of information to PHEs!
This year, the framework will be implemented in several regions in the Netherlands, taking a very local and precise approach, understanding that every healthcare organisation is different. Also several pilots will start with the use of a PHE so we can learn and improve along the way.
With this patient centered approach we want to make sure that there will be PHEs that are developed from the patient’s needs instead of the developers ideas!
I am happy to speak at the HIMSS Liège Conference about "Extending the reach of Patient Empowerment" on Tuesday April 2, 2019 because now more than ever patients have access to technology solutions allowing them to have a more active role over their health.