Determining whether involvement is possible

It is always possible to involve patients, even if your research is already underway. The sooner you involve patients, the more impact their involvement can have on your research. 

If you decide to involve patients later in your study or project, consider why you want to do so. Be sure that it will still add value. 

Decide where you want to involve patients and whether you will be able to use their contribution. 

Even if your research is very technical or fundamental, collaborating with patients can have a positive effect in many ways. Various research agendas show that patients themselves also propose fundamental research topics. Patients clearly do not only consider applied research to be relevant. 
Furthermore, patients can think about outcome measures that are relevant to them in technical studies. It may be necessary to provide additional instructions on the study in a way in which the patients can understand what the study is about, but in enough depth to enable a substantive discussion (not too simplistic). 

Moreover, discussions with patients motivate researchers. 

An example 

The Sint Maartenskliniek in Nijmegen has embedded cross-project patient involvement in one of their departments. They do not work together on a single specific study, but do so within a research area. They have been doing this for a number of years now with a buddy system for researchers in the Rheumatology department. This is called the STAP project (Sleutel Tot Actief Participatiebeleid – “key to active involvement policy”). The project leader, coordinator and several participants talk about the project in  this video  (in Dutch).  

Before this project started, I only knew about such patients from what I’d read in scientific articles. Although I’m convinced that these articles are very important and will contribute to a solution, I also think that it is valuable to know more about the ‘human’ aspect of the disease. It turns out that there is a world of difference! 

Patient involvement does not always seem obvious, because the patient population is not or not yet clear. This may be the case for fundamental research. This is also the case for non-chronic conditions, such as birth care, oral care and ear aches, or when it concerns prevention, in which case the patient has not yet been identified.  

If patients have been identified, it can still be difficult to reach them, because there are often no patient organisations for the aforementioned non-chronic or acute conditions. 

For fundamental research, you can determine whether the commissioning client / funding body targets a specific group. If there is a patient organisation for your target group, contact them to explore together whether they have knowledge questions from a patient’s standpoint that match your research interests. They may already have been collected in a research agenda! 

If you are dealing with a broad target group that you cannot reach through a patient organisation, you can try to get in touch with patients and future patients through healthcare providers and social media (forums, Facebook). 

Physician researchers or researchers from a medical institution often have patients in their own practice who are able and willing to participate. Specific experiential expertise is not always necessary. Sometimes experience as a patient is sufficient. 

If reaching one specific group of patients for one study is difficult, you may be able to collaborate with other researchers to approach populations together. 

An example 

The Oral Health Research Agenda, for example, was drawn up to include the most important topics for oral care research from the perspectives of oral care providers and patients. Oral care patients are not easy to specify. Everyone needs oral care: from ‘healthy’ people who have their teeth checked every six months to people with chronic conditions and many oral care problems. 
 
It was difficult to reach patients due to the broad patient group and the lack of a general patient organisation for oral care. That is why research initially focused on people with a variety of chronic conditions that were known often to have an affect on oral health. Patient organisations for people with these conditions do exist. The topics that emerged from these patient groups were later evaluated using a questionnaire among a larger and broader group of citizens. 

Conducting research on a rare disease can be daunting when it comes to patient involvement. After all, there is only a small population that can participate. Furthermore, it is likely that there is also a physician-patient relationship in addition to the researcher-patient relationship. 

This is offset by the fact that there are often very active and motivated patient organisations. Moreover, patients often know more about their rare disease than professionals do. 

An example 

The ASTERIX research consortium  gained experience involving patients in improving clinical trials for rare diseases. A patient think tank was one of the ways in which patients contributed ideas about important outcome measures. After all, what is ‘progress’ for a patient? By using Goal Attainment Scaling in clinical research, studies can become more successful and more relevant. 

Some patient groups are in a vulnerable position. You may think that patients who are seriously ill, for instance, are unable to participate in research. 

However, do not assume that people do not want to contribute to research, but ask them. Many patients are actually very happy to be able to contribute to improving healthcare.