Workshop digital collaboration with patients: values related to digital collaboration through Telerehabilitation at Roessingh

In my research line at Roessingh Research and Development (RRD), I am looking into value sensitive eHealth design, which means, I want to explore how we can account for human values when designing eHealth technology. Values in this context mean: what people consider important in their lives.

In March 2021, together with colleagues from Stichting IKONE and RRD, and patients and professionals from Roessingh Center for Rehabilitation I explored the questions:

  • What is the value of digital collaboration via Telerevalidatie (an online portal for rehabilitation) at Roessingh Center for Rehabilitation for patient and caregiver?
  • What gives professional and patient energy in this process of collaboration?
  • From this energy level we discuss together what is needed to have confidence in getting started with Telerevalidatie.

Why is that important?

All of our stories are filled with values. Values are beliefs about what is desirable and refer to what is important to people in their lives. They are often unsaid, yet they are of great importance in our daily actions. In fact, decisions are often based on values. Sometimes consciously, sometimes subconsciously.

Values are general criteria or principles that provide guidance in:

  • making decisions;
  • setting goals;
  • taking actions.

When we develop technologies, we often talk about how important it is, that we include the users, so that we understand what their needs and requirements are. But, whether intentionally or not, technology supports or hinders other aspects that people consider important. In other words, technology cannot be considered value-neutral.

Take as an example a triage system that automatically generates triage scores, gives healthcare professionals the option to overwrite these scores, but requires them to justify the overwriting before they are allowed to proceed. According to research, this discourages professionals from using this feature, makes them feel like they are making a mistake, potentially undermines their confidence and hinders them from exercising their professional authority. So it is also important to identify people’s values so that we can factor this into the development and deployment of technology.

Together with healthcare professionals, patients and researchers from RRD, IKONE conducted a workshop, where after a round of knowledge we heard a personal story from a patient expert from IKONE and a patient from Roessingh. These stories were the starting point for talking about values, what energizes patients and caregivers to work together within telerehabilitation.

Report Values Dialogue Telerevalidatie

Even though the workshop was conducted three years ago, I consider the outcomes quite important, so I would like to make them public here as well (a shorter version also was published recently on the website of RRD). IKONE’s report is available also in Dutch here. The most important values are presented below:

Efficiency and commitment

  • As a patient, you can also connect faster with your healthcare professional.
  • In paediatric rehabilitation, efficiency is experienced through the Telerevalidatie portal. This goes from parent to professional as well as from professional to parent. Parents sent a video of a child. Often they do this the very next day. It is also very nice to see that parents can see videos of the child. They are thus more intensely involved with the child.
  • It is also literally much faster and more pleasant. Sometimes professionals watch videos of each other. That is also very pleasant. We see from each other what we are working on regarding a particular patient. Based on that, you can align goals.
  • You become more of a team, you work more together!

Independence and self-direction

  • People feel more independent by using the portal. You can be active with the portal at your own time and place. A statement that fits with this is, “Finally I can do something on my own again.” It’s not just about contact with the caregiver.
  • A lot of information also becomes accessible to the patient. That also feels more ‘independent’. You can regain your own control. This allows you to better prepare for the conversation with the healthcare provider, for example. Or you can look back at your own medical data. For example, how was my physical health last time?

Proximity

  • The collaboration between patient and healthcare professional is enhanced by the portal. All sorts of components of the digital exchange provide that degree of proximity. For example, working with the portal encourages the patient to keep doing the exercises. It also makes the professional feel closer by making it easier to connect.

Convenience

  • It is important that the portal works well. That is important not only for the patient, but also from the professional side. It should be usable with ease. It makes it more accessible when the portal is very easy to use. It is also important that you can use it with multiple devices. The patient would like to be able to use the portal in various locations and for that it is important that it works on your phone, on your tablet and on your computer.

Trust

  • Being seen and heard more gives trust. It is important to know who can see what. You share your personal information. For that, it’s important to know which professional can see what. You want to be able to trust that you are sharing some data or experiences with your own professional. Then you really start sharing what you want to share. Being able and daring to say what you want to say and what you are up against ensures that important communications are not left behind.

What gives to be able to express the named values within the collaboration?

  • Clear information and communication creates confidence
  • Convenience gives confidence. An app that works, where I know the privacy is in order. Both patient and professional should not want to think about whether data is processed and stored securely. One patient commented, “I shouldn’t have to do any tricks. It should all be super simple”.
  • For the professionals, “You have to be able to trust that when you post something, for example uploading a video and a message, that it is actually posted.” If something doesn’t work, both healthcare professional and patient become frustrated. Telerevalidatie is only a resource when it all actually works.
  • One professional recounted an experience in the early stages of Covid-19: The digital treatments worked especially briefly after the physical treatment. A long period of digital contact, without physical contact, still gives distance in due course. It would help when a hybrid form of treatment is used in the future. So both physical and digital contact.
  • Important that parents know the functions of digital “writing”.
  • It is also important that explicit permission is given for posting videos and photos. Precisely by clearly asking permission for this, you give people trust. People must also be able to say ‘no’.

I would like to thank the colleagues at IKONE, the patients and healthcare professionals from Roessingh Center for Rehabilitation for their time and their trust sharing with us their stories and values.

 


This post originally appeared in a slightly different form on the websites of RRD.

Values, VSD, VSD4eHealth

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