Patient opinions are recognised as a key driver of successful pharmaceutical marketing. After all, who are the end consumers of the health care system? It’s the patients, and some of their voices have become so prominent that they have earned the title ‘Patient Opinion Leader’ (POL), a phrase that intentionally reflects the value that key opinion leaders (KOLs) have within the pharmaceutical industry. The interaction between POLs and the industry is early in its evolution and challenges to this relationship are beginning to be defined.
Recognise the various shapes and sizes of POLs
POLs are distinct from the broader patient population in that they have a higher profile, which is based on media and communication skills, which they can use to fly the flag for the patient interests.1,2 These interests are different to those of the medical and scientific community and can’t be represented by medical opinion.1 Such interests might include challenges to quality of life, such as pain and fatigue, rather than clinical measurements such as disease progression. POLs can also make the industry aware of currently unmet needs. These might include a demand for enhanced practicality of devices, or the advantages of consistent long-term behavioural support. Identifying these needs not only opens avenues for the industry to develop more relevant products, but also enhances the success of current therapies by removing obstacles to adherence. An additional benefit of genuinely listening to patient opinion is the development of public trust in a product, brand or company.
The platforms used by POLs are diverse. POLs might be working in collaboration with industry or they may be independent. Some are found on social media (with prolific examples including ePatientDave and Andrew Shorr). Some are active in patient advocacy groups, committees, panels or research funding bodies. POLs and pharma employees are not mutually exclusive —industry professionals with personal experience can provide genuine and honest communication with other patients about a therapy area or product.1
Map the pitfalls to effectively use patient opinion
Using patient opinions in a valid way has challenges. These arise partly from difficulties in quantifying engagement — How can the real influence of a patient be measured? How do you know when you are really listening to what they are saying? These challenges mean there is ongoing development of treatments, products, education and communications that are not realistically workable or relevant for real patients.
Furthermore, there may be an intrinsic ‘Catch-22’ in attempting to work closely with POLs — With scepticism around industry motivations, openly using POLs for marketing purposes may endanger patient trust. For example, there is still a demand for nonpartisan proponents of vaccine use as suspicion continues towards individuals who have received industry funding.3 This same suspicion could apply to patients funded by the industry to act as POLs.
People trying to listen to patient opinions should also be aware that POLs may have their own conflicting interests.2 It might be hard to discern someone who is genuinely using their journalistic or public speaking skills to represent patient interests, from someone who is trying to raise their personal profile for their own (potentially subconscious) ambitions.
There might also be a selection bias in listening to POLs rather than the wider patient population.1,2 It shouldn’t be assumed that loud opinions are a surrogate for all opinions. Many patients may be in quiet disagreement with the voices that are supposedly representing them. The internet and social media provide a channel to capture these views — but does everyone state their opinion through Facebook comments and online forums? Some patient opinions may be deliberately concealed, for example if experiencing side effects may lead to discontinuation in a trial.1 There are also some groups of patients who are inherently less able to articulate their own needs and desires (such as children, or people with dementia).1
Your way forward with POLs
Similar to how the industry has segmented physicians in order to target key messages, different groups of POLs are now being noted — Some appear to concentrate on disease advocacy while others aim to directly support the needs of other patients.2 Do these different POL ‘objectives’ require differing engagement strategies?
Understanding the diversity of patients who aren’t opinion leaders is also informative. Who does each patient influence and who are they influenced by? What do they want from their healthcare? How do different people cope with their differing medical challenges? These differences are not predicted by demographics.1 Patient experience might also not translate across the varying aspects of care available in different countries and health care systems.2
The physician’s office is one arena in which patient opinions can be sampled. Supporting the doctor/nurse-patient dialogue, and accurately reflecting it, could therefore be informative. Providing accurate and accessible scientific and medical information and education to patients also has advantages — Informed patients have been historically capable of instigating economic and regulatory change in healthcare systems from the ground up, an example being patient activism leading to the US Orphan Drug Act.4 Medical education initiatives might be enhanced by supporting patient access to high quality patient education, for example by collaborating with the Patient Information Forum5 and accrediting materials to The Information Standard.6
Overcoming some of these challenges could be achieved by listening to patients and supporting what they are saying, rather than trying to engage them.7 This may require the training of marketing teams and doctors on better, more thorough communication with patients.7 Such training might be particularly relevant as the interaction between pharma and POLs is increasingly scrutinised by compliance regulators.1,2,7
Despite the power of modern marketing and technology, word of mouth remains a powerful influence on behaviour.2 Ultimately, to successfully pitch to the patient consumer there may not be a substitute for correlating brand strategy with real patient benefit.
- Patient Opinion Leaders: The New KOLs for Pharma? Pharmaphorum. June 2014. Available at: www.pharmaphorum.com.
- Jehan Dix M. (2015). What are the Possible Futures Impacts of Patient Opinion Leaders on Healthcare and Healthcare Stakeholders? (Bachelor thesis, Haute école de gestion de Genève, Switzerland). Available at: http://doc.rero.ch/record/258519/files/TDEE_Dix_Meryl_Jehan.pdf. Accessed September 15th 2016.
- Domurat Dreger A. Reporters Need to Avoid Experts with Vaccine Industry Funding; Here’s Why, and Here’s Help. 12th September 2016. Available at: http://alicedreger.com/list Accessed 15th September 2016.
- Novas, C. Orphan Drugs, Patient Activism and Contemporary Healthcare. Quaderni 2009;68:13–23. Available at: http://quaderni.revues.org/262. Accessed 27th September 2016.
- Patient Information Forum. Available at: http://www.pifonline.org.uk. Accessed: 27th September 2016.
- The Information Standard. NHS England. Available at: https://www.england.nhs.uk/tis/our-members/. Accessed September 27th 2016.
- What is a Patient Opinion Leader? Patient Empowerment Network. Available at: https://www.powerfulpatients.org/2014/04/30/what-is-a-patient-opinion-leader/. Accessed: September 15th 2016.