In conversation with Jacqueline van den Bos, Eric van Schie and Marie-Thérèse Woltering, members of the preparatory working group on patient participation.
'No matter how much professionalism and expertise you have in-house, you can't do without the input of patients. With that input, your service provision will gain significantly in quality.' Jacqueline van den Bos is firmly convinced of that. Just like Eric van Schie and Marie-Thérèse Woltering. They worked as QVS and Long COVID patients (PostCOVID) on the patient participation working group of Q- and C-support. The result was a solid report on how that should take shape and the vacancies for the Patients and Experts by Experience Platform (PEP-QC).
Asked why they are committed to this topic, Eric is immediately clear: 'The patient is the most important stakeholder. You have to give them a voice in the organization. With the PEP-QC, which can provide solicited and unsolicited advice, we are taking an important step, but that is not enough. The professionals within C- and Q-support must be convinced that they have to involve the patient in the plans they make, the activities they devise, the policy they develop, and so on.' 'And at the front end', Jacqueline adds, 'and not only when the plan is completely finished. That is a pitfall, that driven and experienced professionals think that they know what is good for a patient and therefore start to fill it in completely themselves. In addition to the PEP-QC, the flexible shell of experienced experts is being expanded further, so that there are sufficient patients who can be involved in the activities at the front end.' For Marie-Thérèse it is simple: 'As an organization, you can only achieve your goals if you know what the target group needs.'
Restoring trust
According to Eric, the added value of the PEP-QC also lies in restoring trust. 'I still have the feeling that with the loss of research and patient input, the outbreak of corona and the arrival of C-support, Q fever patients have felt less seen by Q-support. That feeling lives among patients. Patient participation can help to turn this around. After all, the goal is for the patient to feel heard and to have input. It is therefore a great pity that Q-uestion has not joined in.' Jacqueline, as co-founder and first chair of the patient organization Q-uestion, wholeheartedly agrees with this.
Collaboration
Of course, this experience does not apply to Long COVID patients. Nevertheless, there will soon be collaboration in the PEP-QC. Marie-Thérèse: 'The clinical pictures hardly differ from each other. The social and political context is partly the same. If you want to play a significant role, you need to know the history and work together.' Eric and Jacqueline also see the advantages of such a joint PEP. Jacqueline: 'The attention for Long COVID is many times greater than it ever was for Q fever. You can get angry about that, but you can also use it. In this way, Q fever can piggyback on the interest in that other post-infectious condition Long COVID (Post-COVID).'
Eric: 'And can we also benefit from the results of research, for example? Ultimately, we are in the same boat. We all suffer from similar complaints as a result of an infection. And there is currently no treatment, for either. In the PEP-QC, it may sometimes be necessary to distinguish between Q fever or Long COVID (Post-COVID), but I hope that we can find each other and join forces to improve services and make society more sensitive to our problems.'
The patient participation working group consisted of six patients, three affected by QVS and three by Long COVID. The working group was supervised by two external experts, Christel Batenburg and Hadewych Cliteur, in close collaboration with Nelleke Maathuis, patient participation employee at Q- and C-support. The working group has produced a report that now, together with the vacancies for the PEP-QC, forms the first steps towards implementation.
Nelleke Maathuis supported the working group, looking back she says: 'This was a very nice process. There was good cooperation and a great result was delivered. It is now up to the PEP-QC and the flexible shell, but especially to Q and C support to continue with this. Because Q and C support must be imbued with the importance of patient participation in their DNA. From board to secretariat and from project leaders to aftercare advisors.'
Vacancies PEP-QC
Q- and C-support wants to optimally meet the needs of patients with its services and develop policy in co-creation, where it is patient-related. That is why we want to explicitly involve patients in setting up patient-related processes and (further) developing guidelines and/or research. In order to properly safeguard this input within Q- and C-support, the PEP-QC will be established in November 2022. The PEP, like the preparatory working group, will consist of three people affected by Q fever and three people affected by Long COVID (Post-COVID) and an independent chair.
The PEP-QC provides solicited and unsolicited advice from the perspective of people affected by Q fever or Long COVID. The members also have a signaling function. The starting point is to conduct the dialogue. In this way, Q- and C-Support work together with patients to build optimal care and service provision.
When are you suitable for the PEP-QC?
Everyone agrees on this: you have to be able to step over your own shadow, keep the general interest in mind and be able to communicate somewhat clearly. For the chairperson, it is not necessary that he or she has had Q fever or COVID. It is important that he or she can empathize with the problems and above all can connect well, keep an overview, lead the team and have the interests of the patient in mind.
We are looking for you!
If you would like to participate in discussions and brainstorm about Q and C support, please apply as a member or as chair of the PEP-QC!
NB the response period for Long COVID patients has now expired.
