Specifying research questions
Involving patients in specifying research questions (a research agenda) increases the social and societal relevance of health research. But how do you go about doing that?
A series of articles in the Lancet that sparked debate, entitled ‘Increasing value, reducing waste’, concluded that the vast majority of medical research does not help healthcare providers and patients in making important decisions. There is also support for this conclusion in the Netherlands. Things can be done differently.
First of all, by putting topics that are relevant to everyday practice on the agenda. “By working together with intended users of expertise and knowledge, and by asking questions that matter” (Health Council of the Netherlands (Gezondheidsraad), 2016). This calls for collaboration with patients when drawing up research agendas.
In addition to social and societal relevance, a joint research agenda provides more benefits:
- it serves as a frame of reference for research choices;
- it opens the dialogue with other stakeholders;
- it reveals any blind spots.
An example
In 2006, the Dutch Burns Association (Nederlandse Brandwonden Stichting) used the Dialogue Method to draft a research agenda in collaboration with people with burns, researchers, and healthcare providers. During the consultation phase, people with burns mentioned ‘itching’ as a very important topic, whereas researchers and healthcare providers did not see itching to be an important theme during this phase of the project.
It was not until the final dialogue phase, when people with burns, researchers, and healthcare providers entered into a discussion with each other, that the topic of itching was homed in on by other stakeholders. It in fact ended up as the second item on the research agenda during the final voting round. Itching from burns was therefore truly a ‘blind spot’: not until patients mentioned this was it recognised and prioritised by the others present.
Be aware that more and more patient organisations and health funds already have research agendas of their own. Use these as an inspiration. They can make your own research questions more relevant and clearer.
An effective research agenda represents the interests of a broad group of patients and all relevant stakeholders (funding bodies, the scientific community, healthcare providers). Moreover, it must be created legitimately. It is therefore essential to use a reliable and scientifically validated method, such as the Dialogue Model (Athena Institute, VU Amsterdam) or the Priority Setting Partnership (James Lind Alliance).
Dialogue Model
In the Dialogue Model, all relevant stakeholders, including patients, are consulted in a structured and phased manner about topics that they consider to be important. These topics are merged and prioritised during the discussions, resulting in a single joint research agenda.
Priority Setting Partnership
In the British James Lind Alliance method (JLA), practitioners, patients and their relatives produce a Top 10 of the most important unanswered research questions in a step-by-step ‘priority setting partnership’. Input from patients and their relatives is given the same weight in the prioritisation as that from practitioners (Schoemaker, Prakken & Furth).
Focus points
To draw up a legitimate and widely supported research agenda, the use of a validated method is more important in this research phase than in other research phases.
Consider allowing patients to participate in the project group in addition to participating in the focus groups and dialogue sessions. In this way, you ensure involvement on multiple levels.
Make sure that the patient representatives involved really hold sway, so that e.g. a hospital department that has created a research agenda does not take the lead and controls the process too much (safeguarding mutual process facilitation).
Both of the methods mentioned above cover this, which is all the more reason to use them.
Patient involvement sometimes seems impossible when drafting a research agenda. This could be the case if the patient population is not clearly defined or is very wide-ranging, such as, for example, for non-chronic conditions, including birth care, oral care and headaches, or when it concerns prevention, in which case the patient has not yet been identified. Even then, however, it is still possible to involve patients.
If there is no patient organisation for a disease, you can get in touch with patients or future patients through healthcare providers or social media (forums, Facebook), for instance.
An example
This was the case, for example, with the ACTA Oral Health Research Agenda, which included the most important topics for oral care research from the standpoint 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. The broad patient group and the lack of a general patient organisation for oral care made it difficult to reach patients.
That is why research initially focused on people with a variety of chronic conditions that were known to often have an effect on oral health. Patient organisations for people with these conditions do exist. The topics that emerged from this patient group were later validated using a questionnaire among a larger and broader group of citizens.
Read more
- J.E.W. Broerse et al., Involving burn survivors in agenda setting on burn research:An added value?
- J. Elberse et al, Patient involvement in agenda setting for respiratory research in the Netherlands, European Respiratory Journal 2012 40: 508-510; DOI: 10.1183/09031936.00018812 (Ersjournals.com)