Finding the appropriate experts by experience

It is important to determine in advance what you want to achieve with the patient involvement. What questions are you looking to find answers to? How can the patients’ perspective improve your research? 

Each objective, and the questions that you have, will call for a different type of input. Each type of input requires a different contribution and therefore a different patient profile. This means that each type of input calls for its own approach to find the appropriate experts by experience. 

Examples of objectives/questions for involvement, and corresponding suggestions for action: 

What is it like to live with the disorder?

• Talk to a patient, visit a patient day, etc. 
• Results: inspiration, heading in the same direction, mutual understanding. 

During Puls, the biennial event organised by the Dutch Heart Foundation, patients, healthcare providers and scientists meet and discuss cardiovascular diseases. 

What are the most important questions and concerns of people with the disorder? 

What impact do the side effects of a drug have on quality of life? 

• Ask a group of patients through a focus group, interviews or questionnaire. 
• Results: clear impression of the needs, problems or questions of a representative and diverse group of people with a particular disorder. 

Together with patient organisation Impuls & Woortblind, the Netherlands Pharmacovigilance Centre Lareb investigated what the experiences are of adults using ADHD medication (in Dutch). 

How do you reach people with a migration background?

You want your study participants to truly reflect the actual patient group, including all the variations in age, educational background, culture and gender. This will not happen of its own accord. You will need to do something for your participants to be representative of the patient group. Ideally someone from the patient group will help you achieve this proportional representation. ZonMw provides 8 tips for inclusive research (in Dutch). 

How can you reduce the burden of this research on the patient? 

Is this research question relevant from the perspective of young people with the disorder? 

• Request (non-voluntary) advice/viewpoints from the patient adviser, patient panel or patient advisory council. 
• Results: substantiated advice or opinion from a patients’ standpoint on a content-related problem. 

Which research design will provide the best results? 

How can we best tailor the information for patients to the target group?

Creating comprehensible patient information about a clinical trial is an activity that can best be done together with patients (or patient representatives). This includes a Patient Information Letter (PIL), cover sheet, animation or other materials. These tools and tips for comprehensible patient information can help you: 

• PIFmaker  (in Dutch)
• Work together (on an equal footing) with patient representatives. Include them as a member of the project team or as co-researchers, through co-creation for instance.
• Results: a relevant product, interim product or action plan, tailored to the patient target group and the issue from the patients’ perspective. 

Additional information on objectives of patient involvement can be found under the Kickstarter-topic Structuring patient involvement. 

Patients can participate in different roles. Ensure that the desired contribution is in line with the objective that you have in mind (see Step 1). The role of a patient can change per project phase. This depends on the patient’s knowledge, skills and interests in relation to the objective and the structure of your project. In addition, the type of research (e.g. fundamental or applied research) can also help determine the choice for the best possible input by patients. 

Researchers at LUMC opted for extensive collaboration with patient representatives in their research. In doing so, they used principles from design thinking. Within this ‘user-centred design research’, researchers and patients work together in an interactive and iterative process to develop a smart asthma inhaler that is patient-friendly and meets the needs of the patient group. 

For additional information on the different roles, see the Involvement Ladder  (in Dutch) and the Involvement Matrix (in Dutch)s, useful tools for discussing and clarifying the roles. 

Tip: Spend sufficient time on Steps 1 and 2, preferably in consultation with a patient organisation. Many organisations now have a coordinator for the engagement of their patient representatives. Record the agreements made with a number of evaluation and interim evaluation moments. Modify agreements on the manner of collaboration if necessary. 

Each type of input from a patient representative calls for a specific profile. 

Knowledge/skills

Does the contribution by the patient representative require specific knowledge and skills? This could include skills such as being able to read English texts, specific presentation skills, or having a general understanding of how research works. 

Also, is it important that they themselves (or a loved one) have the disorder? You can expect an expert by experience to have the disorder themselves (or a loved one does) and that they have sufficiently come to terms with the experience to be able to reflect on it. The knowledge of an expert by experience also transcends the individual and is relevant and representative. Having a disorder does not necessarily make someone an expert by experience! 

Availability and venue

Are modifications to the research design needed to enable patient involvement? Because of the nature of the disorder or disability, for instance? Or perhaps due to the specific characteristics of your project? 

Everybody understands that a location has to be accessible to people in wheelchairs. However, my problem is that I am not in a wheelchair: if sufficient allowances are made for the number of steps and walking distances between different rooms, toilets, etc., then I will be able to manage just fine. If not, I will have to arrange a walker or mobility scooter just to be able to attend. I’m not always prepared to do that. If only researchers were to check this beforehand, then I would be happy to plan this together. 

Is there a reimbursement allowance available for the use of experts by experience? The expenses incurred by a patient representative (travel, parking or telephone costs) must always be reimbursed. If someone regularly spends more time on the project or substantial preparation is required, it is recommended that they are compensated for this as well. 

Focus points 

• Avoid looking for the ‘one in a million’.
  Sometimes it is wiser to recruit more patients than to search for one person who ticks all boxes. The patient representative involved may also appreciate having a fellow player to be able to brainstorm with or to cover for each other in case of illness, for example. That is why patient organisations already often use pairs (or even trios) of patient representatives. 
• Pay sufficient attention to reciprocity:
  What does the patient get out of contributing, why should someone invest time in your project? Does the profile that you have drawn up match the input you are asking for? 
• Keep an eye on representativeness:
  Is a patient speaking on their own behalf, or do they represent a larger patient group? Does the patient representative actually have an overall understanding of the patient group you are targeting? 

During the BhURN project (burns research agenda development) there was extensive collaboration with the Association for People with Burns (VMB). The young people who survived the Volendam café fire, often with severe burns, formed a relevant subgroup for this study. However, the patient organisation was not aware of this. They were well organised locally, though, and could eventually be involved in the questionnaire survey through a contact person in Volendam. 

Are the objectives, roles and profile clear? If so, how do you go about finding patients who meet these criteria? We will give you some pointers. 

Patient who speaks on behalf of a group

• Search via patient organisations. During your discussions with a patient organisation, make it very clear that you are looking for individuals who can represent an entire group of patients. Do not assume that this is always the case! If necessary, discuss the possibilities of conducting a support base consultation or using a previous survey. 

Would you like to know how patient organisations feel about collaborating with researchers? The Dutch Kidney Patients Association (NVN) has written a clear and easy-to-read article on this (in Dutch). 

• What if there is no patient organisation? In individual contacts, without a direct relationship with a patient organisation, you will probably have to make more of an effort to find out where someone gets their knowledge and whether this knowledge is relevant and representative: 
• via consulting rooms  
• via social media channels 
• via your own network 
   

  Tips 

• Aim for a long-term relationship with patient representatives or patient organisations. This increases the likelihood of real in-depth contact and means that you will not constantly be overtaken by events. 
• Schedule introductory interviews  (in Dutch) with the prospective patient representative and make a report of these meetings. Discuss each others’ expectations, motivation, tasks and roles. Some patient organisations already conduct these types of interviews with their active volunteers to determine what type of activity/project they qualify for. This is often done by a volunteer coordinator. 

Researchers and patient representatives of the STAP panel in Nijmegen have drafted tips for sound, long-term collaboration (in Dutch).