While the notion of healthcare technology may be in the spotlight with AI, blockchain and all that, the coalface of care requires building an understanding of patient needs and responding in an appropriate way. Today, in many cases, even some of the most common conditions are subject to a dearth of information, or worse, misinformation that results in poor diagnosis and treatment. I learned this when working with a London hospital on care pathways for DVT; I was naturally interested in the work of Live UTI Free, which offers a clear information resource for patients, practitioners and indeed, researchers.
Read on to learn from Melissa Kramer, founder, how not all technological innovations need to maximize the use of buzzwords or bandwagons, and what lessons can be learned across healthcare diagnostics and beyond.
1. Let’s set some context — what’s the purpose behind Live UTI Free?
We founded Live UTI Free to address a gap in the sharing of evidence-based information to sufferers of recurrent and chronic urinary tract infection (UTI).
To provide some context for why closing that gap is important, 1 in 2 females will experience a UTI in their lifetime, and of those, up to 44% will suffer a recurrence. With each recurrence, the chance of another increases. For many, recurrent UTI is debilitating, and the impact extends to the economy, with billions spent each year on UTI alone.
Despite how common UTI is, there has never been an accurate, standard method of UTI testing.
Although the impact of this issue is significant on many levels, UTI remains an area of women’s health that suffers from steadfastly held misinformation on both sides of the patient/practitioner relationship.
We aim to act as a conduit of information between researchers and patients, bridging gaps in knowledge where possible and shedding light on potential avenues for better diagnosis and treatment. Ultimately, our goal is to use our insights to advance research and development in this space.
2. How do you go about collating and delivering information, or is it ‘simply’ that even the most straightforward info is difficult to find today?
We created our platform because we identified how difficult it was for patients to find straightforward information online, and we wanted to fix this. In order to do so, we first had to collect information from patients themselves, to discover what it was they were looking for and how.
We spent more than 6 months interviewing patients and learning about their online behavior, before we put a single piece of information online. This activity alone meant we had collected more patient-perspective data on the subject than most recent studies.
Once we understood the typical patient journey, and where the glitches were, we started to collate scientific evidence and to interpret it into everyday language. We do this with the help of researchers, but the process is hardly straightforward.
If we relied on peer-reviewed studies alone, there would be little we could offer our audience in terms of new diagnosis and treatment options. Instead, we’ve developed our offering via a combination of studies, and direct input from practitioners, researchers and pharmacists.
This requires a continuous loop of interviews, academic research, and amendments to the information we provide. And on top of that is another layer of patient feedback that directly shapes what we offer on our site.
Long story short: straightforward info, particularly on health topics, is difficult to find. But once you do find it, you also have to make sure it’s useful to whoever it’s intended for.
3. What mechanisms do you have to do this, beyond the online site and do you think your user-centric approach has been worthwhile?
Aside from the patient interviews mentioned in the last question, we also launched a patient quiz at the same time as launching our site. The quiz has served two purposes:
- First, it has allowed us to help direct users to the most pertinent information, based on their current knowledge and experience.
- At the same time, we have collected thousands of data points that, when aggregated, provide incredible insight into patient experience, why people use our site, and what we can do better. Our approach has culminated in extremely fast growth in traffic to the site, and daily positive feedback.
Beyond the online site, we have developed a network of scientists, practitioners and other medical professionals.
We’re also in regular contact with commercial companies that are working on products or services that address specific aspects of recurrent UTI.
By maintaining a user-centric approach and fostering relationships with other key stakeholders, we hope to provide value that extends beyond problem-solving for individual patients. We have already begun to steer change for those in our network.
4. What challenges have you faced starting up Live UTI Free, and how have you overcome them?
We are, and always have been, acutely aware of the position we hold in between patients and practitioners, and information that connects the two. Our primary concern revolves around how to achieve our goals, while adhering to the ethical standards we’ve placed upon ourselves. This in itself is a challenge.
We look at everything we do through this ethics lens. We question how any potential partnership or revenue opportunity fits within our own ethical guidelines, and we carefully consider data privacy when it comes to our patient quiz, interviews and correspondence we receive.
To help overcome this challenge we’ve put in place a funding policy and community guidelines, as well as implementing an ethics advisory board to help with these decisions.
A further challenge has been navigating the line between neutral accuracy, and providing information that is actionable for our audience. We don’t provide recommendations of any kind, but we know through our research that patients want a work flow, rather than a ‘choose your own adventure’.
We’ve partially overcome this by constructing our content in such a way that the user is guided through a logical sequence. The rest is a work in progress, as the required scientific study to truly point someone towards action steps for recurrent UTI, is still in the future. When it exists, we’ll be ready to relay the information to our audience.
5. How do you see things moving into the future?
The data we have collected via our patient quiz is one of a kind, and we’re now starting to use these insights to help guide product R&D for this patient population.
We are currently assessing grant opportunities, in collaboration with researchers, with a focus on patient perspective data. Our reach means we will make a valuable partner in larger research studies and clinical trials, and we’re open to discussion in this regard. We plan to launch an evidence based e-commerce site next year, to bring our many user requests for this to fruition.
Live UTI Free will continue as a user-centric patient advocacy organisation, existing to support our fast-growing community, which includes sufferers of chronic and recurrent UTI, practitioners, and researchers. Readers can get in touch if interested in:
- Patient perspective data and patient experience
- Patient recruitment for clinical trials
- Product development for recurrent UTI sufferers
- Our practitioner and researcher network