Surveys
Introduction
Say a research team wanted to gain insight into how patients are recovering after knee surgery. They design a questionnaire to capture information on patients’ pain, mobility, medication and daily activities. The survey is then deployed online.
However, the survey causes a few issues. Some patients are putting the survey down half way due to its length. They’re also confused as to why their personal information is being asked for. The team also need to ensure they have explained where the data is going to be stored, who can see it and that it meets ethical and data protection criteria.
This can cause issues with gaining trust from participants and may impact the quality of data you receive.
To create an effective medical research survey you need to ensure your research question is clear and you’re targeting your questions to the correct participants. Ensure your questions are designed well and the data is being captured using the best method. Finally ensure sensitive information is kept safe.
Whether you are completing a clinical study, patient feedback, researching a health issue or gaining feedback from healthcare professionals, designing your questionnaire well can impact the reliability of your results.
General survey ideas can be found online using survey templates. These can be customised depending on the research you are completing and what ethics approval you have.
This guide will show you how to design an effective medical research survey, including what questions to ask, important considerations for compliance, how to gather reliable data and how to make the most out of your findings.
What is a Medical Research Survey?
A medical research survey is a questionnaire designed to capture data from patients, research participants, carers and healthcare professionals. The data gained can be used to investigate a specific question relating to health or to understand people’s experiences, behaviours and outcomes.
A medical research survey could be used to:
Understand how patients are recovering after surgery
Understand if people understand their treatment
Understand how often patients suffer from specific symptoms
Understand how a chronic condition impacts their daily activities
Understand how healthcare professionals feel about their working conditions
Understand how patients feel about a specific healthcare service
Medical research surveys can be used in observational studies, clinical research, public health research and patient feedback.
They are different to standard customer satisfaction surveys or generic feedback. They are designed for a specific research question and may need ethical approval, consent and a plan on how research data will be managed.
The questions should be relevant to your research question.
Why Ethical Considerations and Compliance are Important
Medical research often involves personal information, experiences related to their health and potentially vulnerable participants. Ensuring patient safety is therefore very important.
Depending on where you are based, what institution you are attached to, what type of research you’re completing, what participants you are capturing data from and what information you’re requesting, you’ll need to consider the following.
1. Ethics Approval
If your research involves human participants it may need to be approved by an Institutional Review Board (IRB), research ethics committee or other appropriate body.
They may look at what the research aims to achieve, how participants will be recruited, wording of the questions, how consent will be obtained, any risks and how data will be managed.
Not all questionnaires will require the same approval. There may be exemptions or different processes. Speak to your institution or ethics committee to ensure you’re following the correct process.
2. Informed Consent
Ensure participants know what they’re consenting to.
The consent process will generally outline:
What the research is about
What the participant will be doing
How long the survey will take
What information will be collected
Any risks or discomforts
Confidentiality
Whether the participant is participating voluntarily
How they can ask questions or withdraw
Ensure the information is easy to understand. Avoid using complex medical terms.
Depending on what rules apply and what approval you have you may have specific requirements. An IRB may approve an alternative or waiver.
3. HIPAA
In the United States there is a law called the Health Insurance Portability and Accountability Act (HIPAA). This outlines privacy rules for protected health information held by covered entities and their business associates.
A HIPAA compliant survey isn’t just having a privacy statement. You’ll need to consider how the data is collected, accessed, shared, stored and disclosed.
If your research involves identifiable health information then you should consider if HIPAA applies and what permissions and protections are required.
For example if your provider is handling protected health information then you may need to have an appropriate business associate agreement in place with the service provider.
Remember that not all data sets will be de-identified simply by removing names. Other information may still identify the participant.
4. GDPR
If you’re collecting health information from individuals within the European Union then you should consider GDPR.
Health data is considered a special category of personal data and requires an applicable lawful basis to process it. There must also be a condition for processing special category data.
Depending on your research there may also be requirements to be transparent, minimise data, keep it secure, store it for the required amount of time and give participants their rights.
Other countries will have their own rules around privacy and research. Always ensure you’re following the correct rules.
Clarify Your Research Question
Before creating your healthcare research questionnaire, decide exactly what you want to understand.
If your research question is too vague such as ‘understand patient health’ it will be difficult to create useful questions. Create a specific research question.
Example:
Vague question: Understand how patients are recovering.
Specific question: Understand how patients are describing their pain and mobility in the first 6 weeks after knee surgery.
Once you’ve decided on your research question you’ll need to decide what information you need to capture.
You may want to understand:
How often they suffer from symptoms
Changes in their physical activity
Their experiences of treatment
Medication adherence
How confident they feel
Quality of life
Access to healthcare services
Ensure all your questions are relevant to your research questions. If they’re not helping answer your research question then consider removing them.
Finally decide who your target participants are. Depending on who you’re targeting (patients, carers, clinicians, hospital administrators) you may need different questionnaires.
Choosing a Clinical Research Survey Tool
When choosing a clinical research survey tool, ensure it meets your practical requirements. This will depend on what sensitive information you’re capturing, the design of your research and what policies your institution has.
Consider:
Security
Does the provider outline how secure the data is? Are there encryption, permission and authentication measures in place?
Ensure you know who can view the data and if you can limit access to the correct team.
Privacy
Check what privacy terms the provider has.
If you’re using HIPAA then ensure the service provider has the appropriate business associate agreement in place if they’re handling protected health information on behalf of a covered entity.
Don’t take their word for it. Ask specific questions and speak to your institutions compliance team.
Anonymous Data
Sometimes you won’t need to capture any identifying information such as names or emails.
If possible, design your survey to allow anonymous or appropriately de-identified data to be collected. However, consider whether combinations of answers could identify someone.
Consent
Ensure you can provide the correct consent information.
Use conditional logic to show the relevant consent information.
Conditional Logic
Conditional logic can be used to show relevant questions based on previous answers. For example if they say they’re suffering from a particular symptom then they could be shown additional questions around how often they suffer from it.
Export
Often you’ll want to analyse the data using statistical software or spreadsheet. Ensure the platform allows you to export clean data. The answers should be consistent and incomplete responses should be easy to understand. If your approved research process requires data to be moved between systems then consider the form integration options.
Accessibility
Patients may be completing the survey from home, at their clinic or whilst recovering.
Ensure the survey is mobile friendly, easy to read, has clear instructions and easy to use.
Whilst a general form builder may be suitable for simple questionnaires, do not assume they are suitable for identifiable health information. Always ensure the platform meets your requirements.
Creating Effective Patient Survey Questions
The quality of your medical research survey will depend largely on your questions.
Patients may be in pain, stressed, tired or unfamiliar with medical terminology. Using clear and considerate language will help reduce confusion and gain more complete responses.
Simple Language
Try to avoid using any technical terms.
Instead of asking ‘How often do you suffer from post-op discomfort?’ ask ‘How often have you been in pain since your surgery?’.
Instead of asking ‘Rate your functional mobility’ ask ‘How easy is it for you to move around during the day?’.
One Question
Ask one question at a time.
Don’t ask ‘How satisfied are you with your treatment and communication with your doctor?’. This is two different topics. Ask two separate questions.
Avoid leading questions
Leading questions will prompt participants to answer in a certain way.
Instead of asking ‘How much has our excellent treatment helped improve your health?’ ask ‘How has your health changed since starting the treatment?’.
Consistent Scales
If using rating scales, try to make them consistent.
Use a 5 point scale with ‘Not at all’ to ‘Very much’. Ensure the scale has clear labels and ask them to consider a specific time frame.
Consider using validated questionnaires
If you’re researching a well known topic such as pain, mental health or quality of life then there may already be validated tools to measure this.
Using an appropriate validated tool will help keep your data consistent and make it easier to compare with other research. Ensure it’s appropriate, you have the correct permissions, clear guidance on how to score and who it was designed for.
Example Medical Research Survey Questions
Below are some examples to help you design your questionnaire. Ensure they’re relevant to your research question and go through the correct research process.
Patient Feedback
How would you rate your overall experience?
How clearly did your healthcare professional explain your treatment options?
How confident do you feel following your care instructions?
Was it easy to get answers to your health related questions?
If you’re looking for a general patient feedback questionnaire then a customer feedback survey template can give you some ideas. Ensure the language and design are suitable for your research.
Symptoms and Recovery
How often have you had pain in the last 7 days?
How has your condition affected your daily activities?
Have you noticed any changes to your symptoms since your last visit?
How easy has it been to follow your recovery plan?
Healthcare Professionals
What are the main issues you face with patient workload?
How would you rate communication between different healthcare teams?
What resources would help you provide better patient care?
Open Questions
What has been the most challenging aspect of managing your condition?
What could have been improved during your treatment?
Is there anything else you’d like us to know?
These shouldn’t be considered a validated clinical tool. Ensure your final questionnaire is relevant to your research protocol, participants and any measurement standards.
How to Complete a Medical Research Survey
Following a process will help you manage your research.
Step 1 – Research Question
Create a specific research question. Decide what outcomes you want to measure. Is this an exploratory, descriptive or hypothesis driven survey?
Step 2 – Target Population
Decide who you want to target. Consider age, diagnosis, treatment history, location or other inclusion/exclusion criteria.
Step 3 – Research Method
Decide if you want to complete your survey online, paper based, over the phone or a mixture.
Ensure it’s accessible to your participants, meets your research requirements and keeps data secure.
Step 4 – Design Questionnaire
Ensure your questions are organised into sections. Start with clear instructions and ask more sensitive or difficult questions where appropriate.
Remove any unnecessary questions and don’t ask for any personal information that isn’t required.
Step 5 – Consent and Ethics
Create your participant information, consent documents, questionnaire and data management plan.
Submit for the correct approval. Don’t start recruiting or collecting data until you have the correct approval.
Step 6 – Pilot Survey
If appropriate, pilot your questionnaire with a small group of participants.
Ensure the language isn’t causing confusion, there are no technical issues, all options are available and the questions aren’t taking too long to complete. Make any amendments through the correct approval process.
Step 7 – Recruitment
Use approved methods to recruit participants. Explain why you’re carrying out the research. Don’t use any language that may pressure people to participate.
Keep an eye on response rates and technical issues. Don’t view any information outside of what the research team are authorised to.
Step 8 – Data Analysis
Check for incomplete responses, duplicate responses, inconsistent answers and missing data.
Analyse your data using the correct method for your research. Document any exclusions and cleaning of data.
Step 9 – Data Storage
Follow the approved process for storing, accessing, sharing and deleting your data.
When presenting your findings ensure they’re accurate and don’t include any information that could identify individuals. Highlight any limitations.
Sample Size
The number of participants you need will depend on your research.
If you’re trying to get an overview of a large population you may need more participants than if you’re carrying out an exploratory study with a smaller group.
For quantitative research you may want to carry out sample size calculations. This could include:
Expected effect/difference
Desired power
Significance level
Variability of outcome
Expected response/attrition rate
For qualitative research the number of participants could depend on your research question, sampling strategy and depth of information required.
Just because you have a large amount of responses doesn’t mean they’re representative of the population. If you’re only recruiting from one clinic or online community then your findings may not be applicable to people from different backgrounds or with different healthcare experiences.
Speak to a statistician or research supervisor to decide the best sample size and sampling method.
Analysing Medical Research Survey Results
Once you have your responses you should analyse them to ensure they are relevant to your research question.
First check your data is complete and consistent. Look for missing answers, unusual responses, duplicate responses and any issues identified during data collection.
For closed questions you could:
Use frequencies to see how many people selected each answer.
Use percentages to see what percentage selected each answer.
Use averages or medians to understand numerical or scale answers.
Compare groups if your research design allows. This could highlight differences between relevant groups.
Compare over time if participants completed the same survey more than once.
For open questions you could review them using a documented coding or thematic analysis. This will help you identify any common experiences, concerns or suggestions. Don’t assume that if something is mentioned often it applies to everyone.
For example if you’re researching recovery you may find many people mention they’re more mobile but still struggling to sleep. This could help you identify an area to investigate further.
There are tools to help summarise your responses. If you’re interested in how you can present and monitor your survey responses then look at Ovoform’s analytics. Ensure any platform you use for your research data meets your requirements.
Use the correct statistical methods for your data. A survey can help you identify trends but doesn’t automatically mean one factor caused another.
Common Mistakes to Avoid
Even if your research is well planned if your survey isn’t well managed you may get poor results.
Too Many Questions
Having too many questions can cause fatigue and incomplete responses. Only include questions that are relevant to your research.
Using Complex Medical Terms
People may not understand complex medical terms. Use simple language and pilot your survey with your target audience.
Unnecessary Personal Information
The more identifying information you ask for the higher the risk to privacy. Follow data minimisation principles.
Not Considering Accessibility
If your survey can only be completed on a desktop or difficult to navigate then some people may not be able to take part.
Not Piloting
Small issues with your language, design and options can impact the quality of data you collect.
Not Checking the Terms of the Tool
Whilst a tool may be suitable for general feedback it may not be suitable for identifiable health information. First check that the tool meets your security, privacy and contractual requirements.
7. Generalising the results
Consider potential issues when interpreting the results from your survey, including sampling bias, response bias, missing data and design.
Choosing a platform to create a basic survey
If you are doing a study that doesn’t include identifiable health data then a general online survey platform could be useful to create questionnaires.
Look for features such as ratings, logic, custom design, exporting data and tools to integrate with.
Researchers wanting to create a basic questionnaire could look at the options available for creating forms in Ovoform.
However, don’t assume these platforms will be HIPAA compliant or suitable for collecting clinical research data. Ensure the platform you choose includes strong security measures, privacy policies, contract terms and has been approved by your compliance team.
Final Thoughts
Medical research surveys should start with a specific research question and ensure you know exactly who you’re asking. All decisions made, including the wording of questions, recruiting participants, gaining consent and storing data should be focused on achieving your research aims but also consider the participants.
Ensure questions are relevant, written in simple language and pilot your survey to ensure you have the right amount of questions. Choose methods of collecting data to suit the sensitivity of the information.
Most importantly, think about ethics and privacy in your research design. If participants understand what the study is about and know their information is being managed appropriately they will be more likely to give meaningful and reliable answers.
