Patient-Centered Clinical Trials

Sep 4, 2014 - Sep 5, 2014, Boston

Unleash the Potential of Patient-Focused Clinical Research: Redefine Recruitment, Enrollment and Study Management

Patient Groups & Pharma - Relationships Matter

Research shows that pharmaceutical companies only gain the trust and respect of a minority of patient groups, irrespective of the number of partnerships they possess. Thus, the pharmaceutical industry should strive to improve the quality and not the quantity of their relationships for the future.

At the start of this year, a worldwide Patient View survey stated that Novartis had the best corporate reputation among 30 pharmaceutical companies as stakeholders indicating that it has a patient-centred strategy which provides quality information and useful products as well as having a good safety record. Novartis’s interaction with patient groups is widespread whether it’s supporting thalassemiain Albania, Alzheimer’s in Germany, breast cancer in the US or diabetes with the International Diabetes Federation. Pfizer, who were second in the above survey, has a similar relationship with patient groups as do Roche, Sanofi, and Bristol Myers–Squibb whose recent grants helped HiTops Centre for Adolescent Health and Capital Health’s Patient Assistance and Health Literacy programmes amongst others.

However, is the pharmaceutical industry upholding its reputation and meeting patient group medical and educational needs through these relationships? The survey states that only 42% of patient groups consider the pharmaceutical industry to have a good reputation as compared with 62% who praise the reputation of retail pharmacies. Even more, 38% indicated that the reputation of Big Pharma had declined over the last five years while only 29% feel that companies currently adopt a patient-centred strategy. Unfortunately, these figures are not too different from the 2008 survey when only 37% of patient groups considered Big Pharma to be trustworthy.     

Elena Sainz, a diabetes patient from Mexico, believes that pharma should see patients more as part of the team rather than just a consumer to study, who will contribute to the final stages of a product. Furthermore, Pat McBride, a patient and Patient Group Manager at the PituitaryFoundation that works with the pharmaceutical industry felt that this relationship could be more beneficial by having support to understand changes in the APBI code or in increasing disease awareness. In addition, Simon Davies, CEO of Teenage Cancer Trust states that there needs to be more conversation between patient groups and the pharmaceutical industry. He says, “Researchers should have automatic access to patients but this does not currently happen. If patient groups, pharma and the NHS have a dialogue [on the above], then a type of forum would exist where this can be discussed.”    

Pharmaceutical companies are cautious in their relationship with patient groups since their close connections can sometimes draw criticism from the media or health professionals. For instance, the industry may be prevented from forming a relationship with most patient groups due to ethical implications. In addition, social media, although one of the easier ways to connect with patient groups informally is still not regulated appropriately by the industry which discourages some companies from interacting online. However, pharmaceutical companies should move past their reserved approach as patient groups are growing in popularity and have now started to influence government policy worldwide, especially in Central and South America where the same 2011 Patient View survey stated that 95% of the sampled patient groups wanted to work with Pharma.

To continue developing this partnership, the pharmaceutical industry can focus on improving the relationship between the doctor and patient.  A national cancer group in Malta stated that patients are still not comfortable discussing their problems in a consultation. The pharmaceutical industry can provide guidelines and communication techniques for patients and doctors when they are discussing their illness together so as to discourage non-adherence to a particular treatment. In addition, pharmaceutical companies can assist patient groups in using technology for the self-management of their healthcare therefore empowering patient group members to manage their illness without the dependence on the healthcare professional. Moreover, the industry should celebrate and not fear the use of social media just like Sanofi who emerged as an online leader for diabetes. They created their own social media guidelines, even after having a Facebook PR failure a few years earlier. Mistakes do happen but companies can start their social media effort through giving users more control over their interaction online.      

In the future, the pharmaceutical industry should maintain a constant conversation with all the patient groups that they interact with. Patient groups will start to recognise the real value that the pharmaceutical industry can offer in terms of funding or education if the industry strives to make long-term instead of short-term links. This constant conversation and communication will also ensure that pharmaceutical companies are informed about the continually evolving patient landscape which is something that is currently very difficult for the industry to do.

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Patient-Centered Clinical Trials

Sep 4, 2014 - Sep 5, 2014, Boston

Unleash the Potential of Patient-Focused Clinical Research: Redefine Recruitment, Enrollment and Study Management