Information for the General Public

You are probably reading this because you’ve taken part, or been asked to take part, in a market research project conducted by one of our member companies. 

You will find below some brief information about the market research process and the high standards that the BHBIA requires of our members. 

About the BHBIA

We are the professional association for organisations involved in UK healthcare business intelligence; this includes companies that commission market research and agencies that carry out the market research and data analytics. The BHBIA is a long-established and widely respected organisation. For more detail about the BHBIA please see the website Home page and ‘About the BHBIA’.

About market research

Healthcare and pharmaceutical companies are keen to understand your experience as someone who has a particular health condition, has used health services or as the carer of someone with health problems. Only by understanding your experiences and opinions through market research can they develop the medicines and services that are really needed and valued by you and by your doctors, nurses, and other healthcare professionals. 

Market research collects the opinions and experiences of groups of people. No individuals are named or identified which means that no-one will know that you took part in the research or what opinions or experiences you reported. It is all completely anonymised. 

Your personal information will only be held for the purposes of contacting you about the research and setting up interviews or sending you links to online questionnaires and for organising remuneration for taking part in the research. Your personal information will be protected as confidential and will not be shared with anyone else without your consent.  

Why take part in healthcare market research

Participating in market research is an opportunity to have your voice heard, to have your views and experiences taken into account, and to allow companies to understand your needs and to improve the quality of life for millions of people like you.

Guiding principles for conducting market research legally and ethically

One of the most important areas of the BHBIA’s work is to provide guidance to our members on what we consider to be essential and right for everyone working in healthcare market research. We do this through our Legal and Ethical Guidelines for Healthcare Market Research, updated annually. Our comprehensive Guidelines draw on a range of laws, regulations and guidance, including the ABPI (Association of the British Pharmaceutical Industry) Code of Practice, and the latest data protection legislation.

The four fundamental principles of our Guidelines are:

That is, the freely given, specific and informed agreement for your opinions, experiences, and any other information you choose to share during the research to be saved and used for market research. The researcher must make sure that you clearly understand the purposes for which they are collecting the information you share and how it will be used. 

If the researcher wants to audio/video record your interview or if someone from the sponsoring company wants to watch/listen in to your interview, the researcher must ask you for your consent before this starts.  

These rights include confidentiality, anonymity, and the right to refuse to answer questions or withdraw from the market research at any stage. 

No information identifying you can be passed on to the company commissioning the market research, unless you specifically agree to this. 

Market research is completely distinct from direct marketing, advertising, or selling products or medicines. Researchers must never use market research to do this – it cannot be used to promote products or services to you, or anyone. This means that they must not try to influence your opinions or behaviours during the market research process, for example by encouraging you to ask your doctor to prescribe certain treatments.

Finding out about your direct, first-hand experience of treatments also means we can identify and report any problems that people have experienced with medicines, medical products, or medical devices. This is important because it helps pharmaceutical companies and the medicines regulators to identify any side effects or other problems that they did not know about, such as missing information leaflets or manufacturing issues. 

Market researchers are required to report any problems with medicines and medical products, including side effects, product complaints and other circumstances that could be of concern, called ‘special situations’ (e.g., use in pregnancy) that are raised during the market research. This must be reported back to the pharmaceutical drug safety department and is part of their responsibility to better drug safety outcomes. In such a situation they will ask you for brief details and request your consent for anonymity to be waived in relation to the adverse event, so that the pharmaceutical company’s drug safety department can follow up with you if necessary. You can also choose to remain anonymous, if you prefer, and the report will not include anything that identifies you.  

Working with BHBIA member organisations

To find out if the company that asked you to take part in a market research project is a member of the BHBIA, please visit our Members Directory.

BHBIA members must adhere to the BHBIA’s Legal and Ethical Guidelines, they are mandatory and we provide training and competency certification to support members. We strongly recommend that when you participate in market research you make sure you engage with an organisation that is a BHBIA member and committed to upholding our exacting professional standards.

Glossary

Here is an explanation of some of the specific terms that you may come across during the market research process:

A commonly used term for a market research participant – in healthcare market research this is usually a healthcare professional or someone with a health condition (or their carer). From time to time, this can also include members of the general public.

The company that has commissioned the market research – this is usually a healthcare or pharmaceutical company. Your personal details must never be shared with the sponsor company without your specific consent. In market research the sponsor company does not need to know who has taken part in the research – the report they receive summarises the findings and recommendations so that all feedback and information is anonymous.

The organisation conducting the market research. There might be more than one agency involved – e.g., a ‘recruiter’ who contacts you and asks you to take part, an agency that conducts the interviews and a market research agency that designs the questions and discussion (or ‘topic’) guide and analyses your feedback. 

 The BHBIA recommends that all parties involved are contractually linked to ensure the highest standards of market research practice and information security throughout. 

This is any benefit that you may be offered to encourage you to take part in a market research project (previously also sometimes referred to as ‘honorarium’). 

BHBIA Guidelines recommend that the amount should be appropriate to the nature of the market research and the time or effort involved in taking part – for members of the public it’s a token of appreciation rather than a professional fee. Pharmaceutical companies have internally approved maximum levels for incentive payments, to ensure that they cannot be seen as promotional. These will vary from company to company and are adjusted over time. This means you may be offered different incentive payments for research projects, even if the research itself involves a similar amount of your time. 

Before you take part in the market research, it must be made clear to you when you can expect to receive the incentive and who will be responsible for this. 

This is used to identify suitable participants (based upon specific selection criteria relevant to the market research) for an interview or survey. The screening process is there to make sure that the market research is relevant to you. For example, making sure the health condition you have and your experience matches the type of questions that will be asked in the market research activity. 

If you are not a match, this is called a ‘screen out’ and means you will not be invited to take part in that specific market research activity. It does not mean your voice as someone with a health condition is not suited; it only means we want to speak to people whose experience so far has been different from yours. This helps researchers make sure they get a spread of views, representative of a range of experiences. Researchers should communicate this to you clearly, as the market research sector relies on your good will to carry out market research activities. 

The screening questionnaire also helps researchers to make sure that they interview a cross section of different people in order to fully understand the topic. 

Any information relating to an identified or identifiable living person, who can be identified directly or indirectly by that data on its own or together with other data. The requirements of the UK Data Protection Act 2018 (which incorporates the principles of the General Data Protection Regulation (GDPR)) are built into the BHBIA’s Guidelines. Researchers must protect your personal data at every stage of the market research process, and the Guidelines help them to do this.      

Improving how we conduct market research

Whilst the BHBIA strives to help our members maintain high standards we recognise that, as an industry, there are always things we could improve on. In 2017 a task force of the BHBIA, called the Response Rate Task Force conducted market research with people who had previously taken part in market research themselves. 

We identified a number of areas where we could improve how we conduct market research, reach out to members of the public, and reimburse them for their time. 

This has resulted in the following key recommendations and work is ongoing to encourage our members to adopt these recommendations in their working practice. 

1.       Better ‘screeners’: it’s important for market research companies to ensure that screeners are not too long so that your time is not wasted in answering preliminary questions for a study we know will not be relevant to you; all questions in screeners should be designed to confirm your eligibility and data from screeners may not be used in our analysis if you are screened out.

2.       Clear timings: market research companies have a responsibility to be honest about the time it takes to complete a survey. The length of an interview will vary from person to person but should be reasonably accurate. Sometimes, the length of the screener will be mentioned separately.

3.       Improved research design: market research companies should put themselves in your shoes as research participants and design studies to be as user-friendly as possible and make you want to engage as much as possible with the questions; this includes avoiding excessive repetition, considering the layout of questions and input mechanism for answers, amongst other things.

4.      Prompt payment: incentives you earn as a result of taking part in a market research study should be paid to you promptly; your input and willingness to take part in market research are the backbone of our work and you deserve to be treated with professionalism and respect by market research companies.

5.       Convenient participation: market research companies should take reasonable steps to ensure your participation is at the heart of the process, rather than requiring you to organise yourself around the process – clear and prompt communication is an essential part of this!

Contacting us

If you would like to contact the BHBIA, please use the button below. However, please note that if you have a specific query, issue or concern about a market research project being conducted by one of our member companies, we would always recommend that you contact the company directly in the first instance, as they will generally be best placed to answer your questions.

Contact BHBIA

View the BHBIA Complaints Policy here. Please note that we can only engage with complaints that relate to a potential breach of BHBIA Guidelines.