Finding the Right Patients for Your Patient Experience Study

By John C Mitchell

If you work for a medical-device manufacturer, health insurer, or pharmaceutical company and you’ve decided to study the patient experience, good for you! More and more participants in the healthcare ecosystem have recognized that seeing the world through their patients’ eyes can be a source of game-changing customer insights that lead to better products, services and experiences.  

Understanding the patient journey can be a critical first step. Achieving such an understanding, however, requires studying patients through qualitative market research to acquire the Voice of the Customer—a thorough inventory of patients’ jobs-to-be-done and associated needs, and the touchpoints patients encounter along the way. You will need to interview patients or observe them as they journey from diagnosis to recovery, seeing and hearing first-hand what they need and how they know when the get it (or not). 

But how do you find the right patients to participate? Unless you have your own database of patients at your disposal—which even so is probably limited to your own customers—you will need to recruit participants from an outside source. Fortunately, there are several methods to consider. Here are a few that have worked for us: 

1. Field agencies and panels: Most U.S. metropolitan areas are home to one or more market research field agencies, many of which maintain lists of people with common medical conditions—heart disease, diabetes, hypertension, arthritis, etc.—which they can call on to supply participants for your research project. Similarly, there exist national panel companies that maintain huge lists of individuals pre-qualified by several criteria, including medical conditions. Either type of partner can help your recruit participants, and will also handle all the logistics, which saves you an administrative headache. However, such a service can be costly, and is often limited to common disease states only. 
   
   
2. Advertisements: If you are unable to find or afford a field partner to help you find patients, advertising in local media can yield good results. Local newspapers and sites like Craigslist or Facebook can provide a way for patients who may fit your objective to learn more about your study and volunteer to participate. This method may be helpful with sensitive subjects like infertility, addiction, or incontinence. Costs are typically minimal, however you will need to handle the administration of screening and scheduling yourself, a nontrivial task.  
   
   
3. Referrals: If you need patients with a rare condition, your best bet is likely to go straight to physicians to ask for referrals to their patients. Of course, due to HIPAA rules, physicians cannot hand over patient information without their consent. Rather, you must ask physicians to contact patients on your behalf to assess interest and secure consent, and then to direct patients to contact you. This method is reliable in that you can be confident referred patients will qualify; however, you will need to provide an incentive for physicians to help you out—a cash referral bonus. Make sure you have it in your budget.  

Sometimes, however, you may not even need to recruit patients to your research study at all. Deep patient insights may be buried in data you already have, or in publicly available sources like user forums. With many categories of disease, an online patient community daily engages in a robust discussion of their experiences with getting a diagnosis, negotiating their way through therapies, and managing their recovery. New technologies, like AMS’s ACE™ Automated Content Evaluator, use artificial intelligence to find insights in large databases of unstructured text. Thanks to these tools now gaining traction in the market, you might be able to understand the patient experience without recruiting patients at all. 

If you’d like to learn more about how AMS can help you connect with the right patients or use our proprietary methods to find patient insights in online user-generated content, contact us today.