Enhancing patient involvement

Collaboration between researchers and patients is often brought about as a result of a specific project or research proposal. The following scenario may be familiar to you from your own experience or the experience of those around you: 

• You enjoyed working with a user committee during a study. 
• The recruitment, selection and training period were not easy and stood in the way of achieving good involvement, particularly in the beginning.
• After the project had been completed, everyone went their separate ways and people are no longer in touch with each other. 
• In the run-up to follow-up research, it feels like you have to start all over again. 

How can you avoid having to build a relationship over and over again? 

You can do this by changing your way of thinking. The above example reflects ‘project-oriented thinking’. It is smarter to focus on ‘programme-oriented thinking’, in which patient involvement is embedded in a broader research programme, consortium or permanently in your organisation. 

Patients that are involved in a programme can still contribute to individual projects, but they can also contribute ideas and provide advice on current and future lines of research, valorisation, research proposals, etc. 

To permanently embed involvement in your organisation, you will also have to involve managers, supervisors and directors. Only if they are convinced of the usefulness and necessity of permanent involvement will they be willing to invest in it.  

We already have some successful examples, including: 

• the STAP project in Nijmegen 
• the PARTNER patient advisory committee at Radboud UMC 
• the long-term IMI APPROACH project 

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). 

Sustainable relationship 

More and more researchers and research institutions are maintaining long-term relationships with patients. The advantages to both parties are evident: 

• You learn to work together and to understand each other 
• The collaboration is less ad hoc, with more time for more in-depth discussions 
• Research ideas can be discussed at an early stage 
• Cross-project issues can be discussed 

I’m trying to facilitate a long-term collaborative relationship between researchers and patients. They have to learn to understand each other, and that takes time. Reaching mutual understanding will increase the likelihood that our research will really contribute to better care. 

A sustainable relationship can take shape in different ways. Possibilities include: 

• with a patient panel or focus group 
• embedding the patients’ perspective in a research consortium, for example through a patient advisory committee  
• ‘pairing’ researchers to one or more patients for longer periods. The pairs talk to each other regularly, not specifically about one study (see STAP project). 

If you want to enter into a long-term relationship with multiple patients and want to meet up regularly, it may be useful to organise this regionally. Less travel time for patients increases the chance of a successful collaboration. However, you will have to keep an eye on the representativeness of that group and also on how this group relates to a national patient organisation. 

The STAP project described above also involves collaboration with patients in the Nijmegen region. Researchers and patient partners have defined tips for effective collaboration (in Dutch). Would you like to know more about this? Also read  Finding the appropriate experts by experience. 

Various methods can be used to involve patients in your research. Focus groups, questionnaires and written advice are commonly used, but there is more. 

You can also further refine the methods used, not only in the kind of method used, but also in the number of different methods that you use. For example, you can investigate whether you can increase the impact of involvement by giving patients more say in decision making. You could also increase the intensity by, for instance, introducing the patients’ perspective more often during the process. Or, for example, by supporting a research partner with an extensive patient consultation using a questionnaire. 

The method that you select will also have an effect on the quality of your data. Using a creative method – one that focuses on drawing, building or theatre, for example – will lead to different data than a structured interview. 

The use of a digital method, such as a focus group, can lower the threshold for involvement. One method may be better suited to a particular target group than another method. People with limited language skills, for instance, benefit more from visually-oriented methods. Involving children is easier using playful methods. 

Recommendation: Do not take the method that you would like to use as a point of departure, but get an overall impression of the entire process. First ask yourself what you wish to achieve with the involvement, at what moments, and what role patients will play and only then select the methods that are suitable. 

For example, do you want to ask patients for written advice at two moments in the study, or do you want to first set up an Open Space meeting to generate ideas that you can later validate more broadly using a survey. Or is the involvement interwoven into the project at different points in time and in different types of involvement? 

Or do you expect involvement at different points in time and in different kinds? You can find a list of methods in Step 3 under  Structuring involvement. Let yourself be inspired! 

Using a wider variety of methods can enrich the outcome of involvement, particularly when qualitative and quantitative methods are used side by side. This enrichment pertains both to the content and to the group of patients that you reach: one respondent may enjoy speaking in a group and appreciate the contact with fellow patients, while another respondent may prefer providing input through a questionnaire. It will increase diversity. 

How about having a patient be an interviewer? That is also an option! It can be fruitful to promote the patient to researcher and allow them to do part of the data collection. Read more about this in the interview with researcher Esmee Vijfhuizen and co-researcher Denise Martins (in Dutch). The results of the research were greater when an expert by experience was asked to conduct the interviews. 

It is also possible to attain a more in-depth look by giving patients more influence, in a role that enables more intensive involvement. Patient involvement has different levels, with different degrees of influence. These levels are described using the Involvement Ladder (in Dutch). More influence is not necessarily better, though, and it is important that the right type of involvement is sought for each question.  

Giving patients more influence requires you, as a researcher, to be willing to let go of some of your influence and be open to changes in, for example, you research question, research design or the way you conduct your research. You will probably have to let go more than you are used to. 

It can, however, benefit the quality of your research if you allow for changes that increase feasibility and relevance. Designing meaningful patient involvement is something that you have to learn and develop. This is also the case in having to accept your adapted role as researcher. Start small, frequently monitor the type of involvement and adjust it if it improves the research. This will eventually take you further. 

In the ‘De krachten gebundeld voor een gezonde leefstijl’ (Joining forces for a healthy lifestyle) project, researchers work together with co-researchers: individuals with intellectual disabilities who use their expertise born from experience to contribute to the study. The co-researchers had various roles:

- Preparing the collection of research data. Sharing their thoughts on the use of language, so that individuals with intellectual disabilities can participate in the research and understand how they can give their opinion.
- Being present during the collection of research data. The participants will feel more at ease and receive help with what they want to say.
- Explaining the answers in the analysis phase.
- Adapting the outcomes of research into understandable language. 

Charlotte Poot, researcher at LUMC, developed a smart inhaler for asthma patients together with patients, healthcare providers and researchers starting in 2018. From the start of the study, asthma patients were involved in the research as end users of the inhalers. They worked interactively and iteratively on inhaler prototypes in successive co-creation sessions. 

Giving relevance to your research is one of the objectives of patient involvement. When the patients that you work with are part of the same target group that you are focusing on in your research, you will increase the quality and impact of the involvement.

After all, patients from the exact same target group are best placed to decide whether your research is relevant and whether your study is feasible It is closer to reality. 

Studies with a specific target group sometimes present additional challenges. Taking on the challenge of involving this target group in your research when you think it is difficult or (too) difficult is also a way of going into more depth. 

Try to involve patients from the target group that your research focuses on, or, alternatively, patients who are as similar as possible to this target group. For example, research involving children used to be almost unheard of. Instead, their parents/carers were involved. Collaborating with parents/carers may be easier than collaborating with children, but it does not provide the same input. There are more and more examples of and tools for the successful involvement of children (in Dutch). The same also applies to the involvement of the elderly or vulnerable groups.  

Examples of involvement with specific target groups can be found under Finding the appropriate expert by experience. 

Tip: Bring in the expertise
There are patient organisations, research groups and knowledge institutions that specialise in working with specific target groups. They frequently publish articles on this. If you do not have the relevant expertise in-house, ask these organisations for advice or make them part of your project group. For example: Pharos (Dutch Centre of Expertise on Health Disparities - website in Dutch)  for low literate people, Metamedica  for children and young people (website in Dutch) and Zuyd University of Applied Sciences  for palliative care (website in Dutch). 

A researcher from Athena Institute involved young people from disadvantaged neighbourhoods in Amsterdam in the development of a health intervention through a participatory research approach. The insights gained from this can be found in this scientific article.