Jacqueline van den Bos – PEP member
Why and for what purpose are you participating in the PEP?
I participate in the PEP mainly because I think from the patient's perspective. I think the input of patients is very important and that they are well informed. That they know where they need to be and that they can respond to all kinds of issues surrounding their illness and complaints that they have. As a QVS patient, I was one of the people who took the lead in setting up the patient organization Q-uestion in 2009. I have been advocating for patient interests for years.
Has the past year been what you expected?
This past year has been busy and it has been a lot. It has been a year of searching and finding, but that is inherent to a starting platform or body. It has cost a lot of energy, but that is also what I expected. In general, I do think that we have been a bit behind the facts. Taking it on board at the front end is sometimes difficult. We were involved a bit late in several notes and matters, such as the lifestyle program, the annual plan and the contacts with VWS.
Can you tell us something about where you were really able to take on your role as a PEP member?
In my role as PEP member, my portfolio includes contact with the supporters. That really suits me. In that role, I attended the Q-tour. We have also been working on the PEP newsletter and the new page on the website where people can go if they want to know something or to report something. These are really very concrete matters with which we can reach the supporters and that is necessary. For the future, it is necessary to (continue to) maintain good contacts with the patient organizations.
How do you experience the collaboration with the other PEP members and with the director?
Working with the PEP members is going fantastically well. It is a group of highly motivated people, each of whom contributes their own knowledge and expertise. There is a great deal of respect for each other, and together we really stand there for the patient. I find that very pleasant and I would like to continue to see it that way. There is good contact with the director. It is still a matter of searching and finding the right path, the right time and the right question. And I think that is the case on both sides.
How do you see the future of the PEP?
We want to ensure that patient participation is guaranteed within the organization. For me, the future of the PEP therefore means: giving patients a good place within the organization. A place where they can ask questions, think along, and come up with ideas. The point on the horizon is then that the PEP is fully involved in the organization. Then you can really mean something to patients.
Dave Jonkers – PEP member
Why and for what purpose are you participating in the PEP?
The main reason for participating in the Patient and Experience Experts Platform remains the same as I had when I participated in previous focus groups. I want to do my bit for when another post-infectious disease occurs in the future. So that patients who are confronted with it can be helped faster and better.
Has the past year been what you expected?
Collecting what is happening at patient organizations, and speaking for patients, turns out to be quite a challenge. Patients have different complaints and opinions about what is a priority in what we can do with the PEP. You can't solve everything, but you can make sure that patients feel heard.
Can you tell us something about where you were really able to take on your role as a PEP member?
C-support does a lot of good things, especially in healthcare. But there is still room for improvement in the theme of work and income. I am also in the PEP to proactively put the practical matters that affect a patient on the agenda as a theme. So that we as PEP can exert influence on concrete matters that can have a positive effect on the patient. And not just think along at the higher policy level.
How do you experience the collaboration with the other PEP members and with the director?
In the collaboration with the other PEP members, I think it is very clever how there is room for everyone's opinion, and that everyone feels heard. I think our independent chairman Ment is very strong, he is really the guardian of what has been said and gives good feedback on what has been said. There is also a lot of commitment from the members. It remains, also towards the director, a matter of testing what we can expect from each other and how we can strengthen each other.
How do you see the future of the PEP?
Within the PEP, we have assigned areas of attention to members, and we are mainly working on these in broad terms. In the future, we can focus more on sub-areas within these areas of attention. Communication is my area of attention. What I strongly believe in is that the patients who are registered for Q and C support should be a reflection of society. So how can we reach a broader audience, such as people with a different language or those with less digital skills? The organization is already working on this and I want to make sure that attention continues to be paid to it. The loved ones of the patients should not be forgotten either. A large group of people for whom the impact of a post-infectious condition is enormous and who have a considerable impact on their daily lives in various areas.
Ment Gillisen – Chairman PEP
What made you decide to become chairman of the PEP?
After 7 years of retirement, during which I did all sorts of things, I was ready for activities that resembled what I did with my work. I felt the need to be more socially active. This role of chairman fitted in very well with that. In the past, I was a journalist and then switched to management positions. I have always enjoyed a role as chairman, as well as creating team spirit, so that was a good fit. To this day, I think it was a good decision. I have always believed in putting the patient perspective first wherever that is the case and that is what we try to do. It is extremely motivating to be able to work together with people who experience such a serious condition as QVS or post-COVID to improve the position or the services provided to people who have the same condition. We are vulnerable in that respect if we want too much.
What has the PEP done over the past year?
First, we have shaped the Patient and Experience Experts Platform as an organization, drawn up internal regulations, recorded what we have to deal with among ourselves and who has what task. Second, we have given a number of solicited and unsolicited advice on patient issues such as the lifestyle program and the research and results of the Multi-year Long COVID research. We are working on developing a good relationship with patient organizations. And we think along about the future vision of the organization in the event of a new outbreak of a pandemic.
How has the collaboration with the organization and its director been?
The organization is characterized by a great hectic pace, from a small organization to a large club, that is not so easy. The organization is not yet really used to informing or asking in a timely manner. As a team, the PEP has grown. We try to understand each other as much as possible and to complement each other when we search for consensus and come to positions. We also search with the director for a good form of participation that does justice to the position of the PEP, because for the director it is also an opportunity to improve matters. We are now in the middle of that process.
Can you give a little preview of the role of the PEP?
We participate in the annual cycle, so we think about the themes that should be addressed in 2024. This reveals what we want to see high in the spotlight. We also want to be more visible as PEP and position ourselves a bit more. In addition, we want to see whether we can pick up signals that indicate which issues are increasingly going to become a problem. For example, that after a trajectory with an aftercare advisor, finances, work and income can remain a problem. I am extremely motivated by the idea that we can advise on all these themes. Because then we also give real substance to what the PEP is for. In addition, this body continues to search for the right tax for PEP members.
Is there anything else you would like to share?
By next year (2024) we should have found our place. I hope we can build a good relationship with patient organizations that fight for the recognition of patients.
Annemieke de Groot – Director
What is your vision on patient participation?
In my vision of patient participation, we as an organization have an important role to play for the patient and for professionals. In the elements that affect the service provision to them, you want to let the patients as end users play a leading role. Their experiences and wishes are partly the basis for addressing gaps in knowledge and improving all services and products that we perform or set up.
What do you think of the establishment of the Patient and Expert by Experience Platform (PEP)?
The role of the patient has always been very important. From the first phase of Q-support, a broad system has been set up for this in the organization. With the arrival of C-support, it was good to join forces, so that everyone can look at things from their own perspective and with a balanced voice and can give advice. By establishing this platform as a form of participation, a new step towards formalization has now been taken. A good and important step for the PEP and for us as an organization.
What were your expectations about the functioning of this body?
My expectation was that we could shape the joint vision formation in processes, with regard to the patient role. And that we could eventually extend this to the level of post-infectious diseases.
How do you think it's going so far?
As a project organization, it is sometimes a search for the right momentum of how to involve the platform in the complex themes that are playing internally and externally. Something that used to be organic is now more formal and requires a different way of setting up processes. Partly due to the growth and development of the organization, this now requires a different approach. It must also be taken into account how issues relate to the relationship with patient organizations. But we all want to make it a success and so far valuable input and advice has been given.
How do you see the future of the Patient and Expert by Experience Platform (PEP)?
I see the Patient and Experience Experts Platform (PEP) as an established body in the future. I have every confidence that involving the PEP will become automatic and that we can build a well-oiled collaboration, in which a good relationship is the basis. I have great confidence that we can take great steps together in 2024.
