Analysis and dissemination

The patients’ standpoint can also lead to new findings and more useful outcomes in the analysis and dissemination of research results. This also applies to quantitative studies.

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Drawing up a data analysis plan

Also talk to patients when creating the data analysis plan. They can indicate which interrelationships they consider to be important and which outcome measures have priority. They can also help in determining definitions. When it comes to qualitative research, patients can contribute their thoughts on a coding scheme.

Discussion of interim results

Interim discussions and interpretation of the results with patients help to put the results into perspective and to interpret them. You can then decide together how the data collection should proceed.

Refining results and final results

You can go into more depth by discussing the results with the patients. Patients can explain and interpret qualitative data as well as statistical data. After all, numbers mean nothing without context.

"When drafting the research protocol, a number of important issues were added thanks to the input of patients. We added a questionnaire that assesses changes in functionality. Another unique aspect is that we want other burns victims to help assess the research results (i.e. photos). Without the patients’ representative’s network we would never have had such easy access to this information. This addition will help us determine whether patients who have not yet been treated will assess the treatment the same way physicians or patients do."

Linda Vriend, researcher at UMCG

Contribution to results dissemination

Once the study has been completed, you will want to share your results with the widest possible audience.

The likelihood that patients, patient organisations and their background support will pick up and disseminate your results will be much greater if they have been closely involved in the research. Their involvement in the research not only increases their sense of ownership, but also their willingness to help summarise the research in such a way that it is comprehensible to patients.

Patient involvement per research phase

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Where do you start if you want to involve patients in your research? We'll point you in the right direction based on previous experiences, research projects and literature.