Hans Bart is one of the speakers at the international Linnean webcast 'High Value Care and Corona: Uncertainty as the New Normal on October 28th. Register for the webcast: https://www.linnean.nl/Beheer/Formulierenmodule/1760020.aspx?t=Registration-form-webcast-28-oct-2020
How did you come into contact with outcome-based healthcare?
Twenty years ago, when I was director at Volunteer Palliative Terminal Care Netherlands. Back then, we just didn't call it that. In patients who are in their final stages of life, quality of life and dignified dying is at the forefront, or: should be. At the Kidney Patients Association Netherlands (NVN) I continued to emphasize the importance of patient participation and the involvement of their experiences (nowadays PREMs) and their reported outcomes of care (PROMs). We started with people on dialysis, because there was already a good clinical record. Nowadays, there are more studies in nephrology about the selection process of kidney function replacement treatment (dialysis and transplantation), or choosing for no kidney replacement treatment. Always in combination with clinical outcomes and PROMs and patient value – “what is important to you?”. Ultimately, we want to extend the outcome further to the stage for kidney failure (phase 3 and 4 of chronic kidney disease).
In the movie below you can see the dilemmas of patients who have to choose between dialysis, transplantation or conservative care. Also, the struggles of caregivers are displayed: what is the best care for everyone from a clinical point of view versus what is the best care for this patient, appropriate to what is important to him. In this case, the patient has already had a transplantation in the past and does not want to do so again. In addition, the patient himself chooses the location of the dialysis. Not at home, but in a dialysis center of his choice but in charge of his own dialysis. All elements of outcome-based healthcare are beautifully displayed. Clinical outcome measures, patient wishes and preferences are elements that come back in the process of shared-decision making. The result is the best appropriate treatment for that patient.
What are you doing right now?
A year ago I deliberately took a step back as director of the NVN. Currently I work three days a week as project leader in outcome-based healthcare within Netherlands Patient Federation (PFN) and one day I work for NVN on a number of projects in the field of outcome-based healthcare (Santeon and UMCG). In addition, I will soon start developing a module for carers in the choice aid www.nierwijzer.nl. This is an elective aid based on the experiences of patients who show in movie fragments in a structured way the effects of all forms of treatment (nine forms) on nineteen subjects. The informal care module, which is built in the same way, is added to this. After all, kidney disease has a big impact on the whole family.
What's your mission?
My mission is twofold. On the one hand, I am committed to the emancipation of the patient (and the patient movement). I wrote a book about this three years ago: 'How are you?'. In this book I also point at other emancipatory movements, for instance the movement within mental health care. The patient movement in the mental healthcare has been a pioneer in this respect before. We're on our way with patient emancipation, but we're far from there! It has its own dynamics and development in time. It's a dot on the horizon: supporting patients in expressing what's important to them. And also support caregivers to be candid and invite patients to enter the conversation together. Dialogue is paramount, just as emancipation is always a two-way street.
In addition, I hope that with PROMs it’s possible to discuss topics that were not discussed in the consultation room until recently, such as sexuality within nephrology. That these topics gets a place somewhere in the care process. Whether this is with the nephrologist, the nurse or another healthcare provider, it doesn't matter. That we connect actions to the insights we gain. It is therefore not a matter of collecting more and more data with each other, but of combining the relevant clinical parameters with the PROMs and using them in the dialogue of shared decision-making. In this way, we can contribute to the creation of conditions to improve the quality of life of the patient. We are on our way to this at the end of 2022, when the programme expires. But there is a lot to be done in this ongoing process. We are taking irreversible steps together that must be prosecuted.
What is/was the influence of COVID-19?
Although we talk a lot about patient participation and to shared decision making, in this time of COVID -19, it appears that this layer is very thin. We spoke in the Netherlands in March 2020 about crisis management and used a military structure. As Patient Federation we had to knock on doors to be taken into account in all the guidelines, Black books, triage models, etc. What’s important to the patient? There was a lot of talk about the patient, rather than with the patient. The patient as an object and not a subject. You also saw this in the decisions in nursing homes: there was hardly any discussion with the residents about what they thought was important and also the primary care providers were forgotten. People with limited life expectancy were isolated and a proper farewell was impossible for the dying. With a possible second wave, hopefully this will be handled differently. You can also see that scaling down regular care should have been handled differently. Measures were taken too quickly and the long-term effects were barely taken into account. This is not only about people with (possible) cancer, but also about people who want to prevent deterioration through physiotherapy. Think, for example, of people with spinal cord injuries, with muscle diseases or with Parkinson's. Decline that often is irreversible . In the future, shared decision making must be more embedded in the care we provide with each other.
Do you have an inspiring example/ person?
As director of NVN I have met many people in recent years. Patients with chronic kidney disease who have ups and downs, but give a lot of meaning to life. They add quality to their lives. The real stories of patients. Patients are the examples for me and for which I walk a faster.
What would you like to give others?
The Dutch healthcare is very complex and there are many interests for all parties. Step over your own shadow and work together. This is in the patient's best interest. This way we can improve the healthcare for and with the patient. In addition, self-reflection is an important tool for learning. You can see this in caregivers who become patients themselves. They're going to look at the profession in a different way. Everyone learns from it. Dare to put yourself in that position.
What do you think the future of healthcare looks like?
In the future, we will have more dialogue with each other in the doctor's consultation room. The patient dares to say more about what matters to him. The healthcare provider is more coaching based on his expertise and skills. This also makes it more fun for the healthcare professional. In addition, the quality lies in the interaction between patient and caregiver. We're definitely going down this road together. The outcome-based Care programme 2018-2022 contributes to this in its full breadth, including the IT line. We will jointly make meters and hold this after 2022.
Hans Bart – Programme Manager Outcome-Oriented Care Patient Federation Netherlands – firstname.lastname@example.org