By Meralda Slager
The Netherlands Organisation for Health Research and Development (ZonMw) is a funding agency for health research. It also stimulates the use of the knowledge developed to help improve health and healthcare in the Netherlands. In this connection it is vital that relevant stakeholders are included. In order to make active involvement of patients and health consumers possible at ZonMw, certain conditions had to be created, for patients and health consumers, and for researchers, health professionals and policy makers. In this article I will explain how ZonMw is working to establish the conditions necessary to allow active and effective participation by patients and health consumers.
Participation as the cornerstone
Since ZonMw was established in 1998, the participation of patients and health consumers has always played an important role. ZonMw’s main task is to improve health and healthcare. For it to do so, it must generate knowledge. It is equally important that people use that knowledge. For people to use knowledge, research must address the needs and requirements of patients and health consumers.
Throughout the history of ZonMw, new programmes had been developed by involving various stakeholder groups to analyse the state of play, to articulate the aims and goals of programmes and to set priorities. This mostly occurred at expert meetings and conferences. The findings were put together to create a programme that included a plan of action setting the direction for developments in research and healthcare. A special committee was appointed for each programme. The main task of this committee was to advise on the research proposals submitted, monitor the programme in terms of its aim and goals, and make sure the knowledge generated was transferable. Patients and representatives of patients’ organisations always played an important role in this process.
ZonMw realised, however, that more had to be done to make patient participation structural. The feedback ZonMw received from patients and patients’ organisations and relevant stakeholders, such as researchers, suggested that more support was needed. To make patient participation structural there was a need for training, to share experiences and develop more knowledge of question articulation and of methods and techniques. There was also a need to experiment with various forms of patient involvement. In the following sections I will explain what ZonMw has done to create the conditions necessary for structural participation.
In 2003 ZonMw started with a conference on patient participation in scientific research. This was organised specially for patients and representatives of patients’ organisations. They needed to learn more about participation in scientific research and have an opportunity to share their experiences. A specific wish arising from this conference led to the publication of a guide for patients involved in scientific research. The guide was presented at the third conference. The conference is held every year and important aspects of patient participation have been addressed over the years. Other groups such as researchers and policymakers from various health and patients’ organisations have also participated. The conference themes are determined with representatives of patients’ organisations.
ZonMw has also organised training for patients who are involved in scientific research or want to become involved. The training is provided by Maarten de Wit, one of the main authors of the guide and an experienced patient research participant.
Developing a research programme
One important issue was the need for more knowledge about the effectiveness of patient participation. What are the prerequisites for successful patient participation? What methods and techniques are effective? These questions were addressed in a programme funded by the VSBfund, a Dutch capital fund. The programme was launched in 2008 and will finish by the end of 2013. It has two important cornerstones. One is the evaluation of existing participation by means of formative evaluation. Formative evaluation means that the outcomes of the research can be implemented immediately. The second cornerstone is research into the necessary conditions and feasibility for patient participation.
Throughout the execution of the programme, patients have played an important role at the various different stages, both at programme level and in terms of determining which proposals were accepted. In the second call for proposals patients’ organisations were asked to take the lead and to operate as main applicant.
Over the past few years ZonMw has noticed a growing desire to make patient participation more specific and to adapt it to the specific needs of individual ZonMw programmes. This also requires specific knowledge and experience. In order to meet this desire, ZonMw has appointed an officer to support this development. This will also help to combat tokenism. Patient participation is no longer seen as one patient on one committee alongside a whole battalion of research representatives. It is now considered an important means of addressing health problems and improving the quality of health research.
Exchanging international knowledge
ZonMw considers exchanging knowledge on patient participation as an important step forwards. It held a conference on 11 and 12 April with European researchers and representatives of various organisations called “Exchanging knowledge on participation by EU health consumers and patients in research, quality and policy “. One goal was to jointly assess the state of play in patient and health consumer participation, but another important goal was how to achieve structural exchange of knowledge in Europe. More information about this conference will be available on www.zonmw.nl/en/
About the author
Meralda Slager is a senior programme officer with ZonMw. In 2012 she was appointed consulting officer for participation in the organisation. She is also a programme officer for the ZonMw/VSBfund programme on patient participation in research, quality and policy. Meralda was recently awarded a PhD for her study entitled “The Banality of Good”,which looked at how non-profit organisations give meaning to doing good.
Contact: Meralda Slager, Senior Programme Officer, ZonMw