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Searching for the right company

There are hundreds of pharmaceutical companies operating in the UK, looking at many different conditions and medications. It can seem quite challenging to find a company with expertise and/or experience in a given rare condition, or one who might be interested in focusing on the condition in question in the future, particularly as companies sometimes don’t publicly share the conditions they are working on before trials are underway.

There are a few ways to identify companies that you could potentially work with:

  • Web search: As a first step, try running a web search for the name of the disease you are interested in and ‘pharma’. If this doesn’t give any results, you may need to think about related diseases or an umbrella term that your disease fits into.
  • Clinical trial registries: You may be able to identify a company to work with by checking who is conducting clinical trials in your condition. All companies need to register their trials on national and international databases, which are publicly available search. Try looking at the World Health Organisation portal, gov and the UK Clinical Trial Gateway.
  • Attending events: Attending events such as conferences focusing on rare diseases is a great way to identify companies to work with. Increasingly, conferences offer free tickets to patients and patient advocates, as they recognise the benefits of interactions between industry and patient groups. Conferences provide an excellent opportunity to network with people from many different companies and make connections for the future.
  • Maintaining a website: Companies now actively search for patient groups to partner with in new disease areas that they are investigating. Maintaining a searchable website with clear contact details will enable companies to identify your organisation and reach out to you. Carefully consider whether you want to work with any companies that reach out to you, and don’t be afraid to decline to collaborate if they don’t seem like a good fit.
  • Online networking: LinkedIn is becoming an increasingly popular tool for networking. Consider building a LinkedIn page for your organisation. Make sure to follow relevant stakeholders, post about interesting findings or updates, and get to know people also working in a similar field.

Deciding which company to interact with

Patient groups should consider the following important questions before deciding which pharmaceutical company to work with:

  • Relationship:
    • If you have already met or worked with your primary contact, do you get on well with them? Personal interactions are important; if there is no trust then it will be harder to work together.
    • Will you be viewed as a valued partner and someone with the expertise and insight to make valuable contributions to a drug development programme? Make sure that they have a genuine reason to work with you and are not just “ticking a box” for patient engagement.
  • Values:
    • Do the company’s values align with yours?
    • Is this a positive association for your group?
  • Expectations:
    • Are the company’s expectations realistic? It is important that the company understands the size of your organisation and the resources that you have available.

These questions are important to ensure that both parties work well together and have the same goals and expectations. Take some time to research any potential collaborators and discuss some of these issues with them. This will help to ensure that any interactions that you decide to take forward are right for your patient group.

In addition to these considerations, there are also differences between pharmaceutical companies of different sizes that should be considered when thinking about the company you would like to work with:

Small Companies Large Companies
Often start-ups and biotech companies which have only been established for a few years Often well-known global companies which have been established for many years
Often focus on a small number of drugs or diseases Often work across many drugs and diseases
Unlikely to have established processes and resources in place Likely to have more resources and established processes such as dedicated patient engagement initiatives
Often use the ABPI Code of Practice as guidance Typically, signatories to the ABPI Code of Practice
Interactions tend to be more pragmatic and straightforward Interactions may be more complex because of the size of the organisation and the greater need for legal agreements
Collaborations may be quicker as there is less legal compliance to navigate Legal considerations can make communication and collaboration slower
Can be easier to develop personal relationships due to the small size of the company Can be harder to develop personal relationships due to the size of the organisation

 ABPI: Association of the British Pharmaceutical Industry. The ABPI Code of Practice will be discussed in more detail later in this course.

Reaching out to industry

It can be daunting to approach big pharmaceutical companies, but it is important to realise that the people working in these companies have the same goal as patient organisations: to improve health for patients. Building a good relationship with the company that you’re reaching out to is key. However, industry representatives can be busy, so it is worth considering ways to keep communication as easy and straight-forward as possible, for example:

  • Due diligence: Do not send a blanket email to as many companies as possible. Do your research and only reach out to companies whose work is relevant to yours.
  • Keep communication brief and concise: Make sure any correspondence is to the point. Keeping initial emails short to begin with will ensure they are properly read, and you are more likely to receive a reply. You can always provide more information about the work your organisation does and what you’re looking for once you have established contact.
  • Find the best person to contact: Many companies dedicate someone with a role to establish and maintain relationships with patient organisations. It is worth contacting these people directly, as it will make you seem more professional and committed to the collaboration. You may be able to find the dedicated person’s details on the company website, LinkedIn or via a web search. Job titles will include key words such as ‘patient liaison’ or ‘patient engagement’.
  • Clinician partnership: If you have an existing relationship with a clinician or other medical professional, they could have connections with people at the company through working as advisors or in research projects; they may be able to help put you in contact.