The Dutch Parliament meeting Drs. Corinne Ellemeet 21 January 2019

Monday, January 21, 2019 four representatives of our patient organisations in the Netherlands were invited for a consultation with the Member of Parliament (the Dutch Parliament) Corinne Ellemeet.

The following persons were invited:

1. Prof. Rob Heethaar of Angelman Syndrome Netherlands.
2. Carin King of the Diabetes Association.
3. Fred Lamond of the NFK.
4. Lex van der Heijden of CMTC-OVM.

Ellemeet is a member of one of the opposition parties (green left) which the Netherlands Government Forms.
It is very important that there are patients’ organisations and that they have a powerful role.”

These are the opening words of Minister Bruins on the role of medical care organisations during a debate on patients’ rights in the spring of 2018. He demonstrated his appreciation of these organisations, highlighting the important role they play.

The four of us represent 20 patient organisations and we are the patient experts in the care sector.  We have made three proposals, which are outlined below, based on our experience in this area.  We ask policy makers and decision-makers to refer to them during the development of care policies.

Proposal 1 – rating for patient participation

Patients who experience and share data for better care, now get substantial financial compensation. A special Patient Participation Fund can be established.

We are organising a number of debates which could cover these items as well. The patient organisations would like to suggest:

1. Patient associations with more than 100 members can claim an extra grant of euro 10.000 per organization to outsource for example administrative work. Unfortunately, the rules regarding this additional grant are so strict, that many organizations cannot claim the subsidy, for example, because they don’t want to outsource their back office. This leaves – already budgeted – money, while patient organisations are struggling to get their financing, certainly since the great cuts by Minister Schippers in 2012. A missed opportunity.
2. We would like to ease the rules around the extra subsidy so that patient organisations can use this extra money to better organize their advocacy for example. Not only does this help the patient organisations, this also ensures that patients can participate more often, for example, in research projects.

Proposal 2: secure information exchange

To make it easier to share information and data with multiple physicians and providers, with sufficient security and privacy guarantees. The starting point is that the patient is in control of his/her own care data.

We would love to give the 30 involved patient organisations the following suggestions:

1. Often is listened to patients’ organisations via the Dutch Patient Federation. Although this is also an important signal, there are still very many organizations that are not affiliated with the Patient Federation with different individual interests.
2. In order to gather their interests in decision-making, we would like to see that the Minister for medical care will also discuss with these patient associations their interests as well. This should improve the quality of the legislation around data exchange and cover the needs of all patients.

Proposal 3: recognition of rare diseases

More centres of expertise for rare diseases. Because a rare disease is often not covered by one DTC-code (Diagnosis Treatment Combination), we ask in addition to the reimbursement system to take into account this complexity.

We would like to see …

1. The Minister moving towards a reimbursement system where DTC codes are less strictly defined, especially with respect to patients with a complex care situation.
2. The Minister looking for a way in which complex files can be transferred between different DTC’s efficiently, in order to inform health care providers in the unlikely event that a patient changes/moves between practitioners.

Participating organisations breast cancer Association, Dutch Cystic Fibrosis Foundation, KWF, Parkinson’s Association, Brain Injury, Diabetes Association Netherlands OPCI, Macula Association, CMTC-OVM, St. Restless legs, Noonan Syndrome Foundation, Association for Ichthyosis networks, EN Net, Nevus International, Angelman Syndrome Association, Skin patients St. Hematon, Association for Ichthyosis networks and ITP patient Association.