In the Netherlands, patient organisations are increasingly being asked to cooperate in all sorts of activities, investigations, projects, etc. All in the context of ‘ we talk WITH the patient and not ABOUT the patient’.
There is much valuable knowledge and experience in these patient organisations. These organisations are often in discussion with many professional organisations, the big difference being that these organisations pay their workers. This is something that should change according to the opinion of many.
Dutch Patient Federation
Why should professional and high-quality input from experts be free? By being paid for your input you create a level playing field. Then you are taken more seriously. Many believe that anything that is free is worth nothing. We have taken a standpoint on this issue in a proposal to our members. In this, we argue that not all patient participation needs to be paid. For example, if people only are sharing their own experiences.
But as soon as participation is accompanied by time spent on organisation, training or schooling, it is reasonable that it is paid for. We have suggested a guideline fee of €100 per hour, which is also an average fee for other industry and professional organisations. Compared to the € 85 billion that is spent on patient care, I am not worried that the cost for a patient’s perspective is exorbitant.
So know what you are worth. Be sure that you are not the last one in the line when budgets are proposed. And be flexible, especially when organizations cannot pay this amount.
Dianda Veldman, Director-Driver Patient Federation Netherlands
Muscle diseases The Netherlands
Patient representatives have a key role in the policy cycle. They can exert influence during policy preparation, adoption, implementation and evaluation. This provides valuable information to healthcare providers. It is risky to pay patient representatives directly for this. Because before you know it, it affects their independence. But that doesn’t mean that their input has to be free.
It is normal for health organisations to pay a fee to patient organisations.
I think it is normal for health organisations to pay a fee to patient organisations because they have to select and train volunteers. In addition, volunteers should consult members on a regular basis so that they can really take policy positions on behalf of their supporters. It all takes time, and therefore money, that you can safely charge to collaborative partners. In the Netherlands, we work with a large group of executives and volunteers who are enormously committed . We could never pay them for all their work. But as a token of appreciation, we regularly pamper them. For example, with sincere warmth and attention. So that our work can continue!
Guus Schrijvers, Chairman muscular Diseases Netherlands, former professor of Public Health
Ministry of Public Health, Welfare and Sport
Talking with instead of talking about… ‘ In all our policy statements we emphasize the importance of patient input. Even beyond ‘The patient is the focus ‘ we really want to involve peer counsellors in policy development. That is becoming the standard operating procedure at our ministry. For example, in the project ‘ we see you ‘ for families with severely limited children with multiple disorders, we have involved parents as equal partners. Not only to talk with but also to involve in policymaking. The added value of this is reflected in the quality of the reports and recommendations: they are experience-based.
Of course we want to reward that input. In anticipation of a standard remuneration scheme, VWS is now working with a temporary directive. We distinguish between the one-off and more long-term use of peer counsellors. This is always tailor-made, where we take into account the personal income situation of these experts, especially when people are dependent on a benefit.
Depending on the added value I find a fee of 50 to 100 euros reasonable, especially for toppers. And also, please hire peer counsellors so that they are routinely paid for their input. I really hope that this movement achieves results!
Dr. Erik Gerritsen, Secretary-General of the Ministry of VWS
