Published on 15 April 2015 by Editorial
A survey in 2012* projected that patient power will grow in a number of key areas such as reach into policymaking, drive partnerships to be an enabling force in R &D and shape collaborations in healthcare. Advocacy, whether it is directed towards patient groups, professional medical societies or other key stakeholders such as nurses, is an increasingly important element of a company’s overall strategy.
Creating and implementing a successful long term patient advocacy strategy requires navigating a complex environment governed by strict compliance regulations. To help companies who are considering developing an advocacy function within the Russian marketplace we spoke to Nick Hicks , Director of Commutateur advocacy communications, about some of the factors to consider.
* Source: Patient view Patient Power analysis and benchmarking, 2012
Nick Hicks is Director of Commutateur Advocacy Communications, who helps life science companies create responsible advocacy strategies that support patient access & care and build company reputation. The company mission is to work with clients to facilitate alignment of advocacy with wider strategy so that it supports optimal & equitable patient access and company aims.
The company was founded in 2007 by Mr. Hicks, who has over 20 years’ experience in pharmaceutical companies and specialist healthcare communications agencies, and brings unique insights from medical communications, market access and advocacy experience combined with an extensive network of NGO and European health policy contacts.
Connect with Nick on LinkedIn
Patient organizations are having a worldwide impact; some of them becoming opinion leaders on policy issues in regards to prevention and treatment development. Who are the most prominent, in your opinion, patient/advocacy groups in Europe? What is their mandate?
Prominent is quite a subjective term. I think it is better to mention some of the patient groups who have an established European presence by virtue of the high level work they have done to help their members suffering from a disease. A European patient group can (i) represent a specific disease like Alzheimer Europe, (ii) represent multiple diseases such as European Organisation for Rare Diseases (EURODIS) or (iii) non disease focussed but policy related such as the European Patient Forum (EPF).
Patient group such as these often have mandates which include recommendations to improve access to care for services and treatment options, disease awareness and involvement in guidelines. Some mandates can be very specific to individual groups. Understanding the mandate of a patient group is absolutely vital if a company wants to develop effective partnering solutions for a true win-win. Just because the European group has an established presence it does not follow that all national country patient groups will share the same level. One country can have a very influential patient group but its geographical neighbour may not have such a prominent role.
The value of the patient voice is well illustrated at European level. The EMA (European Medicines Agency) has a number of working committees in which the prominent patient and consumer groups play an important role. Their mandates vary according to the aims of the working committees. For example the Patients and Consumers Working Party (PCWP) provide recommendations to the EMA and its Human Scientific Committees on all matters of direct or indirect interest to patients in relation to medicinal products; patient group members include the EMSP (European Multiple sclerosis Platform) IAPO (International Patient Organization for Primary Immunodeficiencies) and the International Diabetes Federation (Europe). Check out the full list here.
Patient groups are also becoming involved in the ongoing harmonization of EMA and HTA activities. These are new European procedures designed to bring quicker access to safe, innovative medicines for patients. For example the pilots for adaptive licensing and early dialogue pathways currently involve selected patient groups as key stakeholders.
Why does advocacy matter to the pharmaceutical industry?
Advocacy is a key element of a pharma company’s patient centric culture and allows better understanding of unmet needs (patient, caregiver, healthcare professional, payer, healthcare authority & policymaker). Getting a common definition is important as different companies view advocacy in sometimes dissimilar ways. Within a Pharma context, advocacy refers to building mutually-beneficial sustainable partnerships with all stakeholders in a position to influence the successful uptake and use of medicines, services or devices – be it patients, health care professionals, professional associations, payers, ministers etc. Advocacy enables patients and physicians to engage with decision-makers so they understand the value resulting in increased or maintained access of a treatment or service. Successful advocacy allows patients and clinicians to have equitable access to life-saving medicines.
What are the potential pitfalls and conflict of interest posed by pharmaceutical companies and patient groups working together?
Before any activity with a patient group (or any other advocacy stakeholder for that matter) is undertaken, a company must have the necessary compliance infrastructure and support documentation in place. Last year’s unfortunate incident in China highlights the dangers of assuming that compliance can take second place in rapidly growing markets. At the heart of compliance is the need for responsible action and to be very clear about your genuine intent when working with patient groups. If your aim is really about raising awareness about burden of disease for example fine, but if the real reason is to get the patient group to endorse your drug you will encounter compliance and reputation problems.
EFPIA has produced a clear set of principles for working with patient groups which can form the basis for more specific national regulations. These rules are designed to ensure the highest levels of conduct are observed in relationships with patient groups. In Europe, all partnering activities with a patient group must have a contract of agreement between the company and the patient group. This contract clearly outlines the time scale, deliverables, amount of funding and the project parameters. Compliance management of patient group activity has a high resource burden and this needs to be factored in when planning outreach. In Europe, the rules around funding for travel activities can be daunting and it may be best not to become involved in such activities.
Advocacy is not about selling products and product promotion is banned in all partnering projects. Make sure senior management understands this principle especially when conventional sales metrics cannot be applied to measure advocacy activities. It is preferable to have more than one company supporting a patient group. A problem can sometimes arise in rare diseases when there is often only one company working in the specific orphan area. Relationship management challenges and misunderstandings can sometimes centre around a failure to explain to patient groups the differences between unrestricted core funding and funding for specific project activities.
Start small when first working with a patient group; trying to undertake complex type engagement strategies with the patient group too early in the relationship before you have established the necessary degree of trust and transparency can cause problems. Avoid stepping in and out the relationship – advocacy is a long term activity and early exit followed by later attempts to reconnect are difficult. Many of the potential pitfalls can be identified in advance during a landscape mapping exercise.
So how can the industry evaluate what it is doing in the patient advocacy field? How is it possible to measure the level of relationship developed with an individual patient group leader, and possibly the results of specific activities?
Use a mix of proxy and direct measurement criteria. Tailor your advocacy activities to key corporate milestones, for example working with the patient group to better understand how to communicate burden of disease around the time of phase III. Establishing responsibility for managing stakeholders is crucial to ensuring credibility of message as well as appropriate timing and impact of communication. Getting a well-defined advocacy objective and then aligning it with wider company objectives will allow you to measure success. Infrastructure wise have a dedicated advocacy team or individual who is empowered to manage the contact on a daily level. These internal team members can provide valuable feedback as to how the company is perceived by the patient group. Following a specific event / period follow up with the patient delegates asking them to rank their perception of the company’s patient centric culture and measure the change over time. Alternately there are reputation based surveys which measure patient group perception of a company’s patient centricity so evaluate how such a service can be of benefit. See the opening paragraph.
If you could give just one advice to pharma on how to improve communications with the patients what would it be?
Be very clear about what you want to do with patient groups internally before you engage with them. Developing and implementing an advocacy strategy often follows a pathway that is as unique, challenging and complex as the disease itself. Early understanding of the interactions between the key stakeholders will shape your advocacy strategy and initial and long term approach. Developing the sustainable partnership is a strategic investment and should not be seen as a short term expense.
View this long term aim through the lens of Western advocacy principles and Russian cultural and structural nuances. The choice of engagement pathway with the patient group is dependent upon many factors, some more rationale than others. Understanding your own company’s culture and internal structures towards working with patient groups is probably one of the most important. This often being dependent on the type of disease area in which you operate and your product portfolio.
- Mr. Hicks will deliver a keynote at the upcoming 21st Russian Pharmaceutical Forum, which will be held 19-21 May, 2015 at the Corinthia Hotel in Saint-Petersburg, Russia.