24th May represents World Schizophrenia Awareness Day- which is a day dedicated to raising awareness for a mental health condition that affects over 20 million people worldwide (that’s around 1 in 285!). Schizophrenia is highly stigmatized, and many people do not understand the complexities of the condition. Auditory or visual hallucinations, paranoia and delusions are not the only markers for the condition, but they are the ones that get the most media attention. However, these represent the positive symptoms, which make up only a subset of symptoms patients might experience.

When I started researching into the condition nearly 5 years ago it quickly become apparent that getting the true ‘voice’ and experiences of a patient can be tricky to capture- many are not stable enough to have a discussion with you, or there is a risk of triggering a psychotic episode during interviews (e.g., asking them to conduct role play/ hypothetical scenarios). With this in mind, researchers often take the approach of using caregivers as proxies or talking to healthcare professionals (e.g., psychiatrists/ psychotherapists) about their patient caseload. However, for me this is only a ‘proxy’ and doesn’t truly capture the patient voice and their own lived experiences.

In partnership with our Patient team, HRW Synapse have experience recruiting patients with schizophrenia for a wide range of different methodologies (e.g., interviews, online bulletin boards). We follow strict screening criteria (e.g., a patient having milder positive symptoms or having had no relapses in the last 6 months). We also have safeguarding steps in place to monitor for increases in positive symptoms/ areas of concern (e.g., having a psychiatrist monitor the online platform/ allowing the caregiver to be present during interviews). This is all to ensure we are protecting patients and doing no harm in our research.

For these patients our recruitment approaches need to be more tailored than using a standard panel- we partner with experts in the field to help us craft a custom recruitment approach to find the most suitable patients.

  • Multiple recruitment partners: when recruiting patients with schizophrenia it’s important to cast as wide as a net as possible. Many patients will not be suitable to recruit (e.g., positive symptoms are too severe) meaning there is a high volume of screen outs. Onboarding multiple partners to craft customer recruitment approaches is critical to success.
  • Healthcare professional referrals: asking a select few of our trusted and experienced psychiatrists/ psychotherapists for referrals for patients they feel would be able/ willing to participate in market research. This route is most useful when the research also has an HCP phase. Similarly, when recruiting social workers we may also take the same approach.
  • Partnering with patient organisations: our recruitment partners have good relationships with these organisations (e.g., NAMI) and can ask for direct referrals for patients that might be suitable.
  • Exciting Digital Methodologies: we partner with recruiters who can offer bespoke recruitment approaches via social media and online support groups for patients. They have good relationships with patients/ caregivers which can help us reach the right target audience.

 Overall, our mix of approaches have allowed us to recruit a harder-to-reach population of high-quality respondents. They have been able to clearly articulate their lived experiences with schizophrenia. These interviews are (perhaps!) the most powerful, emotional, and insightful pieces of research I have conducted into the disease; and the insights have simply been invaluable to our clients and allowed them to have a greater understanding of the condition.

Recruiting actual patients has allowed us to capture the patient voice in our research. Whilst proxies are a useful addition to our research toolkit to get a well-rounded perspective (especially for the more severe patients), speaking to the patients themselves reveals even more layers of insights for our clients. This will hopefully go some way to help break down the stigmatized nature of the disease- truly hearing the patient voice will help to increase our understanding and acceptance around this mental health condition.

The above represents only a snapshot into the recruitment approaches we take to recruit harder-to-reach patients- if you have any questions about our experience in schizophrenia (or any other therapy area), please do not hesitate to email the team at hrw_synapse@hrwhealthcare.com

By Abigail Graham

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