1. What medical devices are relevant to your disease area?
There are a number of medical devices that are important for patients with incontinence conditions. Bladder installations for interstitial cystitis, neuromodulation devices help patients to address pain symptoms and catheters, are examples of the devices used.
2. Have you seen any developments in recent years in the treatment of the disease, which were helpful to you?
New innovative bladder installations have been very beneficial for patients. These novel devices contain chondroitin sulphate and /or hyaluronic acid. Such devices are far less invasive than other bladder installations and provide a much better quality-of-life for patients.
3. What initiatives to educate people about the disease have you been involved in or seen, which you think might be interesting for other countries to learn from?
I’m involved in quite a few things and have seen some good examples of patient advocacy.
● Public relations and communications: Within our national association, we have set up a public relations group which is flourishing. They have been working successful on getting media coverage and are active on social media, an important forum to communicate with patients and inform. The group also developed very helpful patient-friendly leaflets.
● Promoting the patient voice at scientific congresses: We have a multinational organization, which aims to raise awareness and involves with around 8 European countries. The German group are particularly active and are doing a great job. Moreover, we work with other international organizations such as the International Pelvic Pain Partnership which involves 12 countries with many patient-led activities, and at the Abdominal Pelvic and Pain Conference the World Federation for Incontinent Patients creates promotional activities and organizes both a Patient Day and is actively involved in the plenary session at this conference, which is attended by urologists and urogynaecologists from all over the world.. This year’s event takes place from 11-13 June, just before European MedTech Week.
● Partnerships: We are a member of IAPO, the International Alliance of Patients Organisations and we are working with the UK leads as well as the other groups to discuss issues of common interest, not confined to our disease area only. For example, promoting the importance of patients being actively involved in peer-reviewing guidelines is crucial and even though we are all from different disciplines, we truly believe it is important to have patient involvement in such initiatives.
● Generating public awareness: I informing the public about this condition is crucial, to help to tackle the stigma related to incontinence. We work with the International Continence Society, the scientific society that represents urologists and urogynaecologists, physiotherapists and many others to promote awareness amongst the general public and organise initiatives like the Continence Awareness Week. Taking place this year on 22 nd June, we discuss the issue at a public forum such as a shopping centre or a briefing for the public in a hotel. Next week I will be talking with Polish health authorities precisely to discuss these problems which impact heavily on the elderly for example. Poland is initiating an exciting new pilot project on self-care and I am helping with this from my WFIP position. Providing information on this disease is very important to help people’s understanding of this debilitating disease.
4. If you had a wish to your government and the medtech industry for the future, what would it be?
Government:
At the moment in the Netherlands we have a major issue regarding the reimbursement of the innovative bladder installations I mentioned above.. We are committed to ensuring patients with this condition receive a better quality-of-life and the bladder installations provide this and should be reimbursed. The cost-effectiveness of these products is clearly demonstrated, as patients can get on with their lives and are back to work quicker, rather than alternatives that can increase bladder problems, stress and even depression. We have been involved in 1 court case which we won and 1 which we lost and the process continues. Now we are in the process of appealing and taking the issues to Brussels . It is a question of justice and patients rights. My wish for the future is to ensure that patients and patient advocates are involved in the entire processes and procedures that determing exactly what healthcare is or is not included in basic health packages. We would have avoided all the time, costs, stress and anguish caused, if patients had been involved from the outset.
MedTech industry:
Firstly, I’d like to say I am delighted to be involved in the Patient-MedTech Dialogue. This, to me, is the way forward. Having a forum to discuss and actively engage is very important. I am delighted to be part of the Patient-MedTech Dialogue; this is to me is the way forward: if you’re involved in the procedures and can make a contribution from the patient perspective, the patient voice and from the outset. To achieve this all stakeholders need to be involved and this process must include patients through their patient advocates. iMy wish for the future is that there needs to be further commitment by companies to have patients involved from the start. I know MedTech Europe is working on bringing this forward and it doesn’t happen overnight but I would appeal to industry leaders to see the benefits of having patients involved, especially as we are when all said and done the customers on the receiving end. Thank you.
