Patient Feedback on Medical Market Research Participation
The ‘patient experience’ of disease and its treatments is of huge value for pharmaceutical companies or medical device manufacturers. People who live day-in and day-out with a condition can provide unique perspectives on the impact it has on their lives, particularly where the disease is rare or low-prevalence. Among other things, the information shared via research interviews can be used to improve patient support programmes, test equipment and identify gaps in knowledge.
LDA Research now has a decade of experience recruiting patients globally to take part in surveys, one-to-one interviews and online ethnographic studies. We’re very good at finding patients willing to take part in research, and our experienced moderators are at ease as interviewers or facilitators. For most of our respondents though, being the subject of research is a unique and unusual event. We surveyed some of them to find out more about their experience of medical market research participation.
Respondent Feedback Surveys
In order to access respondents’ feedback on participating in research studies, we surveyed two patient groups we’d recently worked with; stoma users and Alzheimer’s patients. Individuals in both groups had participated in one-to-one online interviews for LDA Research and were asked 5 questions relating to their experience.
1. Participatory Motivation
As researchers we were interested to know why people agreed to take part in research interviews. In both groups the responses to this question showed that there was altruism at work. Individuals wanted to use their experiences to help future patients. A number of the stoma users felt that they had developed an expertise that they were keen put to use for the good of others.
“I am always interested in helping out with research because it shapes the future for other people who need the services in the future.”
One Alzheimer’s participant was taking part because they had found it difficult to access any support, so the research was a way to evidence this. Another Alzheimer’s participant viewed the research as an opportunity to “use thinking skills” and “stay alert and active as I slow down mentally”.
2. Being Interviewed
Participants were asked what it was like to be interviewed about their condition. Both groups described the enjoyment they felt at being asked questions and having their responses listened to carefully, and valued. The interviewers were praised for creating a relaxed atmosphere, and giving time to the process.
“Length of time and one-to-one allowed for more in depth discussion with very friendly interviewer. Felt they were interested rather than just trial number gathering”
The stoma users were particularly pleased to know that their experiences were of use, and a few of them appreciated being able to ask questions of the interviewer and receive responses that added to their knowledge. One stoma respondent expressed relief at being able to talk easily about ‘embarrassing’ issues. Another was pleased to learn about the research that the interview was contributing to.
3. Advice on Improving Interviews
LDA constantly reviews their interview process, so we were interested to see if there were any suggestions for improvements from interviewees. When asked if there were any changes they would make to the interview set-up to improve the interview experience, the stoma group participants said they were entirely satisfied and wanted no changes.
Two members of the Alzheimer’s group felt that more reassurance and support prior to the interview would have been helpful to calm nerves. This kind of information is really useful to our ongoing support strategy. We currently work with a number of support groups and provide aftercare for our research participants.
4. How Does LDA Research Excel in Research Interviews?
The answers for this section of the survey were longer than for any other question and were similar across both groups:
- They use plain language in communications and avoid ambiguity.
- Friendly interviewers who put you at your ease.
- There is clear respect for the views of patients and information is reliably passed on to clients.
- Respondents are given plenty of time to respond to questions; there's no feeling of pressure.
- The interviewers are good at listening to the answers give, which is important because what we say shapes future developments.
5. Advice for Potential Respondents
The LDA team was particularly interested in this question, as the responses given provided valuable insights for the kind of approach we make to potential participants. As with Question 1, a number of the respondents emphasised the future benefits that respondents were contributing to – one of them described it as a “win-win” situation.
“Enjoy the experience with the knowledge that your answers will be helping to improve the care of whatever condition from that which they are suffering for themselves and others.”
One of the Alzheimer’s participants recommended participation as a means of improving your self-confidence. Another suggested that it’s a way to get your voice heard and help to shape future treatments. A number of respondents from both groups emphasised the need for ‘honesty’ when answering questions. One of them stated that honesty is important in order to “get better products”.
About LDA Research
LDA Research is an international research provider specialising in the pharmaceutical industry and medical device sector. Our team is renowned for going the extra mile to find the right people for our clients. We use a range of methodologies to produce our qualitative research data. These are always facilitated by professional moderators and interviewers with previous experience working for medical companies or from senior roles in specialist healthcare market research.