As far as blog post topics go, this is not a sexy one. In the exciting world of social media and cutting edge online apps, forms are the hammers of Internet tools. They serve a vital need but aren’t anything to get worked up about. However, it would be a mistake to ignore the power of forms. Form design can greatly impact the success of online patient recruitment campaigns. So take a break from your Words With Friends game and read on.
If you recruit study patients online, your website probably has a form to capture patient data. In addition to gathering contact information, these forms can be used as pre-screening tools. Unfortunately, the use of forms for pre-screening may have unintended consequences for your recruitment campaign.
Form design is always a delicate balance between the quality and quantity of information gathered. The advantages of online pre-screening forms are fairly well known, with efficiency being at the top of the list. But they also have disadvantages. In addition to identifying the 4 disadvantages of online pre-screening forms, I’m going to discuss 6 key factors to consider before using a pre-screening form.
I’m not suggesting that pre-screening forms should be completely abandoned, but they do deserve thoughtful consideration. This post will provide you with the tools to assess if pre-screening questions are appropriate for your patient recruitment form.
4 Disadvantages of Pre-Screening Forms
1. Patient Concerns About Privacy & Security
According to a recent Pew Research survey, approximately 80% of Internet users gather health information online. And a 2009 survey sponsored by the Healthcare Information and Management Systems Society (HIMSS) found this:
“Consumers are increasingly embracing innovations that enhance self-care, convenience, personalization and control of personal health information,” said Paul H. Keckley, executive director of the Deloitte Center for Health Solutions. “Consumers want a bigger say in their healthcare decisions. Consumer demand for HIT and its potential impact on reforming the system has never been stronger.”
Given these consumer attitudes, you might assume that few patients would hesitate to share their health information online. But it turns out that a significant portion of patients have concerns. The HIMSS survey also found that despite strong consumer demand, nearly 4 in 10 consumers (38 percent) are very concerned about the privacy and security of personal health information.
Considering the challenges of patient recruitment, that’s a number that should not be ignored. My anecdotal experience suggests that some patients are particularly concerned about information getting back to their health insurance companies.
When you ask patients to share personal health information via a form, a significant portion will have concerns about privacy and security. And those concerns will inevitably prevent some from completing the form.
2. A Lost Opportunity to Use Your Biggest Recruitment Asset
The Center for Information & Study on Clinical Research Participation (CISCRP) conducted a series of focus groups with clinical trials participants. CISCRP found one asset to be particularly important to recruitment and retention. “Study volunteers readily and consistently affirm the essential role that study staff and health care professionals play in volunteer recruitment and retention.”
CISCRP also found that study volunteers articulated four core needs, and these needs existed across all ages and socioeconomic levels:
- Want to feel that they are taking control of their medical condition and well-being
- Want to be personally connected to study staff
- Want to be treated as human beings
- Want to know that their participation will make a difference
The second and third needs relate to patients’ desire to be recognized and treated as human beings. Unfortunately, these needs cannot be fulfilled by a form.
Patients who pass pre-screening questions on your form will have the opportunity to interact with study staff later in the screening process. However, some people will want to interact with a human early in the recruitment process.
It’s important to remember that most patients have little understanding of clinical trials, and they likely feel anxious or intimidated. A conversation with study staff can go a long way in putting patients at ease and correcting false perceptions. But research professionals never get that opportunity with patients who need human contact early on.
3. A Lost Opportunity for Future Referrals
A patient who is disqualified via a pre-screening form may qualify for the study at a later date or be a good match for a different study. But if your form turns that patient away, you will never have the opportunity to determine additional referral opportunities.
For example, let’s say your pre-screening form excludes people that have had cancer in the last 5 years. Our hypothetical patient had cancer 4.5 years ago, so he is excluded. But in 6 months this patient would be eligible for the study. Alternatively, perhaps he would have qualified for another study you are conducting. At the very least, you could have added him to your database as a potential match for future studies.
In addition, a disqualified patient may be able to refer a friend or family member who is a good match for your study. I witnessed this scenario several times as a coordinator. Due to the excluded patient’s personal network, I was able to identify a different patient who was eligible for enrollment. These types of referrals occur much more frequently when patients have the opportunity to communicate with study staff.
If you are paying for advertising, your primary goal is to locate patients for your study. But there may be worthwhile secondary goals to consider. For example, you have an opportunity to add information about excluded patients to your database. And that information could prove useful later.
When you buy advertising, you are really buying information. Maximize the insight this information can produce. Though collected information may not always meet your primary goal, it still has value.
4. Pre-Screening Duplication
Site staff, and particularly the PI, is responsible for determining the eligibility of patients. They must confirm that the inclusion/exclusion criteria is met, regardless of whether the patient previously reported this information.
When I was a study coordinator, I could not assume that information I received via a form or central recruiting company was correct. It’s not uncommon for patients to hold back information or be confused about items in their medical history. And the only way for study staff to determine possible discrepancies is to go over every element of the inclusion/exclusion criteria with the patient.
The problem is that patients can grow frustrated answering the same question a second or third time. And this pre-screening duplication can leave the impression of disorganization. That’s not an impression you want patients to have as they contemplate participation in your trial.
Of the 4 downsides to pre-screening forms, this is probably the least troublesome. Typically, a study coordinator can diffuse this problem by explaining to the patient why some questions are asked more than once. However, it’s an issue worth keeping in mind.
Considerations During Form Design
Certain factors should be considered as you determine what (if any) pre-screening questions should be asked using an online form. These 6 factors won’t give you a clear answer but they will help you hone in on key variables.
1. The Source
No landing page exists in a vacuum. You have to consider how people are getting to your site because it will greatly influence how they perceive your message. Are visitors being funneled to you via a respected brand? Or are they being sent by a brand that consistently allows spammy advertising practices?
For example, if visitors are arriving at your landing page because of ads you placed on Google, they have a pretty good reason to trust you. Google has done a great job of cutting down on spammy ads, and they generally have a good reputation among consumers.
On the other hand, you will need to tread lightly with your forms if visitors are coming from Facebook ads. Though Facebook has cracked down on advertisers recently, they allowed a lot of very suspect offers for a very long time.
Facebook was littered with ads like the ones you see on the right up until 2010. Many of these ads offered “free” products or other offers designed to trick users into providing personal information.
People that have been burned by one of these offers might be wary about giving out their personal health information. If you advertise on Facebook and visitors are failing to convert, this point is worth considering.
2. Trust Indicators
For visitors to give you personal health information, they have to trust you. Assess whether your landing page utilizes trust indicators. The first trust indicators visitors usually look for are domain names and other brand-related information. Are you a trusted brand or will your company be unknown to most patients?
If you are a research site that will be unknown to most patients, specific indicators can strengthen trust of your brand. Provide your location so that visitors know you are in the same geographic region and have a verifiable address. Additionally, sites can use the name of their PI in their landing page and perhaps even include a picture.
Think about ways to signal that you are a legitimate company who can be trusted with personal information, and integrate these trust indicators into your landing page.
3. Opportunities for Cross-Referral or Future Participation
As you are assessing potential pre-screening questions, consider how those questions might limit (or enhance) the opportunity for cross-referral or future participation. In some cases, you can be fairly certain a patient will never qualify for a study. In other instances, a patient that doesn’t qualify for your current study might be a good fit for a different study.
If you gather pre-screening information, it’s worth storing that information in your database, regardless of whether the patient pre-qualifies. Should you choose to save the data, you have a couple of options for dealing with disqualified patients.
If you don’t want to speak to disqualified patients over the phone, you can still add them to your database. Just make sure your website tells disqualified patients that they don’t qualify for this study, and ask for their permission to be added to your database.
Another alternative is to tell both pre-qualified and disqualified patients that you will followup with them by phone. A phone call with a disqualified patient will give you a better opportunity to gather information, but of course, is a more time-consuming process.
4. Alternate Contact Method
Perhaps you want to use pre-screening forms for their efficiency but are concerned about driving patients away. One solution is to provide an alternate contact method. By providing a phone number, you satisfy patients who want to speak to a human or are concerned about privacy.
This strategy gives you an opportunity to connect with patients who would have been turned off by a pre-screening form. You still have to do some pre-screening over the phone, but your workload will be less than if you had no pre-screening form at all.
If you go this route, make sure that you are tracking these phone calls as web referrals. You should be tracking every aspect of your web campaign, so you’ll need to institute a special process for tracking calls originating from the Internet.
5. Your Target Audience
Consider the demographics, attitudes, and behaviors of the audience you are targeting. Some will be more comfortable filling out pre-screening forms than others.
The HIMSS survey that was previously discussed had a particularly interesting finding. “Women over the age of 65 and men between the ages of 18 and 24 were least averse to sharing personal health information online.” So you may find that an osteoporosis study, for instance, is able to use pre-screening forms quite successfully.
Determine what kind of patient population will be interested in your study, and assess how they are likely to feel about pre-screening forms.
6. Your Resources
This factor doesn’t need much discussion because it’s a topic that clinical research professionals will undoubtedly be considering anyway. Much of your recruitment plan will be predicated on your available resources.
As you determine the content of your online forms, you’ll want to assess what resources are available for pre-screening patients. In addition, think about whether you are using those resources effectively.
Don’t Guess. Test.
While these 6 factors are a useful place to begin analysis of forms, there is no substitute for testing. The first rule of online advertising is “always be testing,” and forms are no exception.
To evaluate the effect of pre-screening forms on your response rate, you will need at least 2 versions of your form. Divide your form questions into 2 groups: need to know and nice to know. Your “need to know” group will have information like patient contact information. And your “nice to know” group will contain most (if not all) of your pre-screening questions.
Now design a form with all of your questions and a form limited to “need to know” information. Split test these forms and compare their response rates. Which form won and by how much? With hard data, you will be in the position to determine if pre-screening forms are right for your recruitment campaign.
If the difference in response rate is negligible, the efficiency of your pre-screening form may outweigh its minimal impact on response. But if the response rate of your “need to know” form is twice its competitor, the efficiency of pre-screening forms may not be worth it. Of course, the appropriate balance between quantity and quality of responses will depend on the specifics of your recruitment campaign.
During my time as a study coordinator, I probably spent hundreds of hours pre-screening patients over the phone. At times these pre-screening calls were tedious or an interruption. But they were also rewarding.
For many patients, our conversation was in stark contrast to their hurried communications with normal care providers. This interaction might have been the first time someone was interested in delving into the details of their entire medical history. Any concerns about being treated like a “guinea pig” were quickly washed away. Even when patients did not qualify for our study, I hope they viewed our interaction positively.
While I understand the desire to avoid wasting time, we should also consider a more long-term view of patient recruitment as well. Though a patient may not qualify for your immediate study, you still have an opportunity to further the goal of clinical trials education. And that’s a goal that benefits patients and the research community alike.
Awareness and misconceptions remain a significant barrier to patient recruitment. We should think carefully about ending the conversation with patients who initiate communication with us.
For patients who do not immediately qualify for a study, it’s worth considering other means to continue the relationship. Additionally, you might find an opportunity to tap into patients’ personal networks. I have some strategies in this area, but that’s a topic for another day.
If you enjoyed this post, you might also like my tips for patient recruitment landing pages. So what do you think about pre-screening forms or forms in general? Put your thoughts in the comments below.
Jeff Lee says
Another great post, Rahlyn! I’m glad you included that HIMSS survey metric. I hadn’t seen that.