Media coverage of health news can seem to consist of a steady diet of research-based stories, but making sense of what may be relevant or important and what is not can be a tall order for most patients. Headlines may shout about dramatic breakthroughs, exciting new advances, revolutions, and even cures but there may be scant details of the evidence base of the research. Has it been the subject of a double-blinded randomized controlled trial or is it based on case reports? How does the lay reader assess its significance? Is the new advance ready for use, or is this just a first step on a research path which may come to an early dead end?
For the fertility patient, effectiveness is judged by success and an effective treatment is one which results in a positive pregnancy test. They want to be sure that they are not missing out on anything which might make a difference, which is why many choose to opt for a cocktail of conventional treatment with add-ons and complementary therapies. What isn’t always clear is the level of “difference” they expect this to bring. For patients, a treatment which makes a difference suggests a difference between success and failure, while the scientist developing a new technique may be thinking of an increase in single figures. Hyped headlines bring new hope, but may not make it clear that there are still many hoops to jump through before anyone can be certain that a treatment is either safe or effective.
Patients often spend considerable time researching their condition and possible treatments, which means scouring the Internet for anything and everything relevant that they can find, but making value judgments about the relative merits of different sources of information is not always easy. Newspaper headlines are not always treated with the skepticism they may deserve, and the impact of patient-to-patient advice given through online fertility networks should not be underestimated. Anecdotal evidence about others who have been successful after making use of new techniques can have a more powerful effect than experts questioning the scientific evidence base. Clinic success rates are also often seen as a reliable assessment of any particular techniques they may be using.
Going back to the original research paper may seem the obvious suggestion for anyone wanting to assess the truth behind the anecdotal success story or hyped headline, but patients with no experience of reading scientific papers may not be clear about the relative merits of different types of research. The world of scientific research can also present a linguistic challenge as a relatively straightforward theory may appear incomprehensible to a lay reader who would not struggle with the concept, but is hindered by the scientific terminology which works against their understanding.
This is why lay summaries of new research papers are a necessary development for fertility patients. Patients should be able to have open access not only to the papers themselves but also to a compact précis of what the new research means and why it may be relevant to them. This is hugely empowering to those who may feel they have lost control of what is happening to them as they have progressed through fertility tests and treatments. It offers them the opportunity to regain control as they will be able to assess for themselves the relevance of research papers in a way that they can easily understand.
There may be wider benefits to encouraging patients to engage with research. A clearer appreciation of the importance and impact of research may prove to be beneficial when it comes to recruitment of participants for clinical trials. If, in turn, the research community becomes more engaged with those they are researching, it can help the work they are doing to become more patient-centred and more relevant to patient needs and to what they consider to be most important. Patients may also bring their own views about what is right or wrong about research and how it is carried out, responded to, and implemented.
Fertility patients are hungry for knowledge about their condition and how it can be treated, yet it is clear that finding reliable information can be a challenge – and that’s where open access lay summaries on reproductive research should come in.
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