Patient and Public Involvement is a vital part of our work at the Asthma UK Centre for Applied Research (AUKCAR). My Asthma Story aims to take this a step further by making sure people affected by asthma have a voice from the very beginning of the research process – generating ideas for future treatments and interventions.
We launched My Asthma Story in March 2016 and began using both traditional methods and crowdsourcing methods to collect people’s ideas about what works for them in preventing asthma attacks. Since then we’ve learned a few important lessons for using digital methods in health research:
- Time and resources matter
I think researchers often assume using digital methods will be a quick, cost-effective way to answer our research questions. In fact, what we’ve learned is that there is just as much work required to conduct research on-line, and in fact it requires a whole new set of skills! We are fortunate to be part of AUKCAR, and have benefited from the Centre’s support. However, it takes time to build an on-line presence and encourage participation in a study.
we’ve definitely felt a tension between on-line incentivisation strategies and the need to maintain study integrity
The initial planning and development is intensive and requires a research team with skills in website development, graphics design, and digital engagement in addition to the expertise required to carry out a qualitative study.
In addition, even with help from on-line partners, paid advertising should not be overlooked but budgeted realistically for achieving target participation.
- Incentivisation, integrity & ethics
One of the other arguments for conducting research on-line is the vast number of potential participants at your fingertips. But first you have to get people’s attention, which can be challenging considering the amount of noise you compete with on-line. Typically, on-line incentivisation happens through financial rewards, or circulating controversial or appealing media for broad audiences.
Yet within research there are limits on incentivisation to protect participants, and we also want to make sure we are prompting a high quality of responses and sending the right messages about our study. So we’ve definitely felt a tension between on-line incentivisation strategies, and the need to maintain study integrity.
On the other hand, we’ve found that getting patient advisors involved at an early stage has been incredibly helpful for the research team. We’ve also used visuals and videos to generate interest, and built flexibility into our research protocol about how we partner with other on-line communities.
- Balancing on-line & off-line
One good reminder we’ve had is that just because you’re carrying out a study on-line doesn’t mean you’ve got to do away with off-line activity. We’ve had some success using Twitter to let people know about our on-line questionnaire, but other strategies have been more challenging such as trying to host a Facebook chat. Some of it is down to luck and timing, but if we try it again I think we’ll approach more people through word-of mouth and existing networks rather than solely relying on social media.
the true benefit of on-line participation is in allowing people more choice about how and when they take part
I believe the true benefit of on-line participation is in allowing people more choice about how and when they take part, but making connections with people off-line is still incredibly important for getting people invested in your research.
We’ve received approval to extend the study until 31st March, 2017 to allow more time for us to build on the strategies that have been successful.
Read our interview with Melissa about how My Asthma Story was taken from concept to launch