Nine years after first working with WebSurvey Business Analytics on the “The Rare Diseases Project”, Deirdre returned to work again with the WebSurvey Business Analytics team on “The Chronic UTI Project”, the first Australian survey into the quality of life for sufferers of chronic UTI (urinary tract infection).
Both projects, though separated in time, were business analytics projects. Such projects are often part of an organisation's larger strategic innovation, evaluation and renewal cycle, undertaken by internal or external consultants, but they are also sometimes led by specialist practitioners, academics and senior managers.
For both business analytics projects, Deirdre was the stakeholder champion in addition to her full time, demanding employment, so her time was limited. Good data collection design also, as is often the case, necessitated a separation between data collection from identifiable respondents and the principal researcher. Deirdre knew she needed a knowledge support team that could also create a wall of confidentiality between herself and the respondents. She knew she was able to do her own analysis when the results came in but did not see the value in building her own survey collection protocol.
Rare Diseases project
This 2013 project investigated how patient organisations support biomedical research on rare diseases, and how respondents perceive their actual and potential contributions to research, and the opportunities and challenges associated with these activities. Actionable analysis could only be based on results where the candour and honesty of respondents was assured.
The topic had never before been explored in Australia. It was essential, if the findings were to be credible, to keep the respondents' contact details separate from the survey responses. De-identification for confidentiality was also needed to meet the requirements of the ethics committees.
Understanding the challenges and helping design the solution
Deirdre googled and searched for what she wanted - someone who could work with her, would hear her voice and help her solve the problems she wanted to solve as an enabling partner. Someone who could do the heavy lifting that she did not have the time or desire to do. She found us and gave us a call.
She spoke to Andrew. Andrew, WebSurvey's Business Development Manager, loves exploring how projects can be made doable and what challenges people might face when conducting data projects. For Andrew, fun is solving problems others find frustrating.
Research design problems for business analytics projects involve both technical and logistical plausibility. Andrew worked with Deirdre to build a survey a robust survey workflow and respond to the ethics committee's questions regarding online survey design. These design questions are often deceptively simple and there are always many project-critical details that need to be worked through. Details like - how the contact details would be kept separate from the survey responses while also being able follow up with non-completing respondents, how to maintain a respondent's confidentially while also linking to other information about them, what data security and risk mitigation protocols would be used, where the data would be kept and who would have access privileges, and so on. Andrew worked through all this with Deirdre.
Contingency planning to drive response rates
Deirdre's survey also had several other challenges. It was a long survey with many questions, but also had varying paths so that respondents skipped certain questions depending on their answers to earlier questions. Such surveys often have low response rates so a contingency plan was developed, and we hoped it would not be activated.
Deirdre hoped she could get 50 responses from the 114 Australian rare diseases organisations she had identified through internet research. As expected, completions were very slow to begin with, and only 18 organisations had completed the survey after two weeks. So, the contingency plan was activated.
In the past the WebSurvey Business Analytics team has found that the response rate for an online survey increases substantially with the use of telephone follow-ups compared with email reminders. We have also found that telephone follow-ups often reveal willing respondents who have not previously participated due only to irregular email use or assuming the email was junk. Just making the initial call can increase responses.
Deanne, our help desk person, had previously been prepared to follow up with organisation leaders if needed as part of the contingency plan. As her role is within WebSurvey Business Analytics we were still able to protect respondents' confidential information for ethics requirements, maintaining the survey project protocols.
For some respondents, this phone reminder of the survey's value was all they needed to encourage them to complete the survey. In other cases, Deanne went through the survey with them on the phone and entered their responses into the online survey. This commitment of resources was only done after a first telephone follow up had suggested that the respondents were willing to complete the survey but were not able to, either due to IT or technical knowledge reasons or because they had just become stuck. These respondents needed support and encouragement and a reinforcing sign that their responses were valued. Deanne has been part of the WebSurvey Business Analytics team for over a decade, and she has a special talent for working with people and gets genuine pleasure from helping people get unstuck. For these respondents Deanne's willingness to work through the survey showed them not only was their feedback valued but also their time and confidentiality.
We ended up getting 61 responses, giving Deirdre a rich data source for her project.
Supporting vital research
The survey findings, along with follow-up interviews with ten survey respondents who had agreed to be contacted for this purpose, highlighted specific opportunities to support patient organisations' involvement in research, for the benefit of current and future generations affected by rare diseases. One key finding, on the need for a national rare diseases research plan, was recognised by the Australian Government with the publication of the National Strategic Action Plan for Rare Diseases in 2020. The plan highlights the important role of rare disease patient organisations in research. Deirdre's study also contributed to the academic literature in this area, and she published two peer-reviewed articles based on her research.
Chronic UTI Australia - 'Hearing Patient Voices'
Nine years later, in 2022, Deirdre faced a similar problem. Having co-founded a national patient advocacy organisation, Chronic UTI Australia Incorporated, she and her colleagues began collecting information about the incidence of chronic UTI in Australia. They didn't know what proportion of people with UTI ended up developing chronic UTI, but they knew the rates were going up. ¹
Chronic UTI Australia's mission is to put urinary tract infection (UTI) on Australia's public health agenda by advocating for awareness, recognition, education, research, and improved testing and treatment for ALL forms of UTI.
The organisation had received a grant to assess quality of life for patients with chronic UTI and had decided an online survey was the most efficient way to collect that information. Deirdre and her colleagues were experienced at undertaking business analytics projects, and the Chronic UTI Australia team was more than capable, but as a volunteer organisation they were short on time and resources. It didn't make sense to divert their resources from valuable research and advocacy to the technical and logistical tasks needed to run a survey. Once again, Deirdre knew she needed an enabling and supporting team to undertake this project. She immediately thought of us.
Not just survey design; getting involved in technological and logistical problem-solving
This survey into the quality of life for sufferers of chronic UTI was the first of its kind in Australia. Chronic UTI is a neglected and (in Australia) officially unrecognised condition. Even worldwide there have been very few studies worldwide examining these issues. This project was both an opportunity for Chronic UTI to better understand its patient community but also, importantly, to provide targeted and actionable information for a planned advocacy campaign in 2023, targeting health professional groups, researchers, government decision-makers and the media. It was essential that the data collected by the survey was high quality, accurate, reliable, and comprehensive without the survey tool being a burden for participants.
To gain insight into the experience of sufferers of chronic UTI, Chronic UTI Australia wanted to include a scientifically validated Patient-Reported Outcome Quality of Life questionnaire in their survey, in addition to questions specific to the experience of chronic UTI sufferers. Patient-reported outcome measures provide information from the patients' perspective of their views about their health and their health-related quality of life, so that health care services can deliver services that matter to the patient.
Having found an appropriate questionnaire, Chronic UTI Australia and WebSurvey Business Analytics now needed to meet the questionnaire provider's requirements in order to be granted the license to use it. The provider preferred survey participants to complete their questionnaire using their proprietary online tool, but that would have precluded Chronic UTI including questions specific to the experience of chronic UTI sufferers, reducing the value of the survey. Instead, Deirdre negotiated with the provider to allow WebSurvey Business Analytics to include the questionnaire with the specific questions.
The licensing requirements were strict, and the instructions accompanying their application were sparse. Once again Andrew worked with Deirdre to solve the logistical and technical problems, helping to craft questions to the provider and interpreting the responses. The requirements included small but technically costly changes to the standard platform, such as the positioning of the response fields in relation to the position of the items and the position of error messages warning respondents that they'd missed a question. These requirements were difficult to accommodate given the budget of the survey, as they would have required completely rebuilding existing survey modules. Instead, Andrew worked through the hurdles and provided advice on how to respond to their requests, and we were eventually able to use the questionnaire.
“WebSurvey helped negotiate with an important third-party stakeholder to meet their licensing requirements, above and beyond the scope of the project. They were able to communicate unfamiliar concepts and information; the other provider couldn't do that.”
Deirdre had no issues getting enough responses for this survey. Chronic UTI Australia advertised the survey link through its social media channels and got 410 responses, even more than they'd expected.
Data preparation and advanced analysis
The WebSurvey Business Analytics team prepared the data for analysis and Deirdre got to work. Once she had an overall picture of the data Deirdre mapped out further analysis that she needed, but that she recognised we would be able to do more efficiently. Our team worked with Deirdre to run a series of analyses that filled in the detail of the quality of life for sufferers of chronic UTI in Australia.
Deirdre's postscript
The 'Hearing Patient Voices' survey provided robust data showing that chronic UTI typically has severe quality of life impacts. Participants reported that the suffering caused by the condition is frequently compounded by poor healthcare experiences: diagnostic failures; inadequate treatment of acute, recurrent and chronic infections; and lack of understanding and 'dismissive' attitudes by healthcare professionals. The data also point to an avoidable burden to the health system, as a result of people with chronic UTI symptoms utilising a range of health services much more frequently than the general population.
The survey findings have many implications for improved policy and practice relating to the diagnosis and management of UTI, building on contemporary scientific evidence as well as the voices of patients who participated in the survey. The findings are currently being used as the basis for an advocacy and awareness campaign targeting relevant health professional organisations and government agencies.
