What we say

Patient-Pharma interactions; a mutually beneficial relationship?

Jeremy Clark

March 29, 2016

Patient-Pharma interactions are vital for drug development, but are often seen in a negative light. There will always be sceptics; those who think pharma companies have cynical intentions when approaching patients, and conversely, those who feel some patients advocate for the wrong motives. However, in recent years patient advocacy has become a pivotal aspect of the drug development process, where pharma companies have increasingly sought the unique insight that patients can offer.

So can there be a healthy and mutually beneficial relationship between patients and pharmaceutical companies?

Absolutely! Speaking from my own experiences as a patient advocate, and also my past involvement with pharma, I can testify to this.

So how can these relationships be appropriate, and benefit both parties?

Without going into the nitty gritty details, pharma companies and their representatives have to follow strict guidelines when interacting with patient groups, for example in the UK there is the ABPI code of practice. Patient groups also play a major part in creating a good relationship, and making sure the pharma company understands the level of involvement permitted and how to behave accordingly.

How do the pharmaceutical companies benefit?

Pharmaceutical companies are much like any other business. Profits are necessary for them to continue to exist and grow. But with this said these pharma companies are producing a product or service for an end user; the patient. They have to keep the patient in mind at all times in order to be a successful company. In an environment where many patients are starting to dictate the care they receive, proactively campaigning, and informing themselves more on treatment developments, it is crucial for pharma companies to understand patients and their treatment needs. Creating a good reputation and building trust with respective patient groups benefits the pharmaceutical industry. Patients can provide invaluable information on day-to-day living with their condition, their previous treatment experiences, and also what they want to see in the future. The impact this information can have on the development process of a new therapeutic is huge.

How do the patients benefit?

Acting as a patient advocate opens up a number of opportunities. Patients can share their unique experiences with the people working on treatments for their condition, which can have a positive impact on the whole patient community. Advocating for themselves can help patients better understand and explain their condition, and equip themselves with a number of transferable skills. Speaking to many of my peers in my patient community, as well as through my own experiences, the opportunity to engage with pharma as a patient advocate is extremely rewarding, but does also bring a level of responsibility. Understanding your responsibilities and conducting yourself appropriately is a fundamental aspect to being a great patient advocate. For example, being a patient advocate you have to acknowledge that your experiences may have been very different from that of other patients’ and this can influence your opinions. A good patient advocate must always be mindful of the diversity of experiences within their patient community.

Sadly, negative imagery in the media can often portray pharma-patient relationships in a poor light. But pharma companies are NOT the “bad guys.” The patient-pharma relationship can, and does, work. Patient advocacy is going to continue having an increasing importance in drug development. Both pharma and patient advocates have a responsibility to foster appropriate and beneficial relationships. Working this way can have a truly positive outcome for the future of drug development.