Case study: How we conducted rare disease patient research during the COVID-19 lockdown in China

The challenge
Our client needed to conduct a small number of qualitative interviews in China with patients diagnosed with a rare condition which affects children and young adults. The results of the survey were time critical as they were needed to inform a protocol being published in 30 working days. We faced two key challenges, firstly to find, screen and recruit diagnosed patients with a prevalence of 0.9 per 100,000 and secondly to achieve this during the restrictions of the COVID-19 lockdown in 2020.

COVID19 case study
COVID19 case study

The challenge
Our client needed to conduct a small number of qualitative interviews in China with patients diagnosed with a rare condition which affects children and young adults. The results of the survey were time critical as they were needed to inform a protocol being published in 30 working days. We faced two key challenges, firstly to find, screen and recruit diagnosed patients with a prevalence of 0.9 per 100,000 and secondly to achieve this during the restrictions of the COVID-19 lockdown in 2020.

The solution
Research Partnership has a wealth of experience conducting primary research in rare diseases with patients, with a strong network of specialist recruiters so this was less of a challenge. The big question was how to conduct an in-depth qualitative interview with a patient using a remote methodology. The selected methodology had to fulfil a number of criteria:

  • Engage the respondent allowing them to fully participate with the moderator
  • Allow the moderator to control the sharing of confidential material
  • Permit the respondent to share content which they had been given at recruitment and had completed prior to the interview
  • To be easy to use for the respondent on a tablet or smart phone and the call quality had to be of the highest possible standard

We selected Zoom as the best tool for this study as it fulfilled all the key criteria and allowed the respondent to conduct the interview in their apartment without interruption.

The outcomes
The interviews were conducted seamlessly. Respondents reported that the Zoom platform was very easy to use and showed high levels of engagement and interaction with the moderator throughout the interviews.

"Thank you for the overview and raw data, it gives a great insight into how Chinese patients deal with this condition. Once again, thanks for the team for the great effort!"

International Client from Top 5 Pharmaceutical Company

 Permission was obtained for the interviews to be recorded allowing analysis to be conducted directly from the original recordings. This enabled the analyst to get completely immersed in the conversation and understand visual cues. The respondents had no problem in uploading their pre-interview tasks which was used as valuable stimulus for further discussion with the moderator and was included in the final report.

The Zoom interviews were conducted on-time and provided the required level of detail to completely answer the study objectives. The additional benefits included a condensed timeline with interviews located in 3 cities across China and reduced cost per interview as no travel time/expenses were incurred.

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