Patient Associations are not customers!

With all of the hype and attention around patient centricity and the need to engage patients (customers) in their health, many folks in pharma are rushing to engage with patient associations like never before.

Pharma now knows that it needs to better understand its customers and be better attuned to what they perceive as value and one of the best ways to do this is to pay close attention to the voice of the customer.

Associations are not one of pharmas’ customers.  By almost any definition of ‘customer’, associations do not fit that definition. Let me say that again just to be clear. They are not customers! The reality is that engaging patient associations is no substitute for engaging directly with patients.

Sure, it is a step in the right direction but also one that carries with it a risk of going down the wrong path. Maybe they – pharma, think that building relationships with patient associations will help make them more patient focused? Or perhaps there is another motive?

In most cases, pharma works with them and in return either pays them in cash, support, or sponsorship. They may be, at best, stakeholders or at worse merely another supplier to pharma. Associations come in all shapes and sizes, many are substantial businesses in their own right, but they all need to balance carefully how they support their members while meeting the needs of operating as either a for-profit or not-for-profit corporation.

There is a huge potential for a conflict of interest.

Now don’t get me wrong, working with Patient Associations is better than not working with patients but it is no substitute for actually working directly with individual patients and caregivers.

Let me give you an example.

I guess most of you are car owners. And most of you belong to one of the many motorist associations around the world for a variety of reasons. These motoring organisations play an important role in advocating on key issues and sometimes speaking as a representative of their membership. But, I know in my case, they do not, and indeed cannot, speak on my behalf on many of the issues that I am concerned about as a motorist. They play an important role but less so actually representing the views of their individual members.

OK, I can hear many of you saying…’but healthcare is different, it is not about cars’ and that’s true but the principle remains.

Patients Associations represent large numbers of patients and caregivers in a particular disease area and their powerful voice is certainly useful in advocacy and awareness, but there are obvious limitations to their ability to represent individual patients and caregivers.

One of the keys to working closer with customers, being patient centric if you like, is that the ‘customer segment’ or ‘target group’ is actually made up of individuals, and the only way to better understand customers is to engage them as individuals. Most of the time pharma looks at groups of customers (often members of these groups or segments are only ‘similar’ when looked at through the pharma lense) and takes this aggregated data and makes the assumption that it is representative of most customers in this segment. It is a pretty blunt way of understanding customers!

Anyway, pharma has used, and continues to use, associations in awareness and advocacy, both directed at patients as well as payers and government, and clearly associations can contribute or even start an active debate on topics of importance to their members and pharma.

Vertex Pharmaceuticals is a great recent example of a company that continues to mobilize patient associations in support of many of its products such as those in CF. It has gained very visible support for treatments in CF from the various associations, but there seems a clear sub context here. Certainly the association wants its appropriate patients to have access to breakthrough treatments (often without any mention of cost and avoiding that discussion altogether) however, the relevant pharma company sometimes has more invested in the strategy than simply that objective.

Using Vertex as an example, and clearly there are many other pharma examples to choose from as well, this time in Australia, again with CF. One of their treatments cost, in round figures, about A$300,000 per annum. Luckily – in more ways than one, there are not that many patients in Australia, so the burden to the payer while significant is not overwhelming. Vertex realizes and acknowledges that the treatment will only work on around 90 per cent of patients. The government has already agreed to reimburse this important treatment, as it should, but takes the position that if it only works in 90% of patients then it should not be used or reimbursed in all patients, only those that it is relevant for - a straightforward pay for performance approach.

Now the CF patient association is active in this debate, but, at least from what I have seen and read, it has stayed out of the pricing/appropriate patient identification/pay for performance side of the discussion and remains focused on access, pushing that all suffers should have access to this government paid treatment.

I don’t think there is anything untoward happening in this case, but it is clear to me and perhaps I don’t know all the facts, but it certainly looks like conflicting and differing interests between the association and pharma.

The association is pushing for access for all, while the pharma company, clearly wanting access to all, is pushing for payment for everyone who uses the drug even though it will not work as advertised in all patients.

The negotiations between the government body and Vertex, as I understand it, has been resolved with some pricing agreements based on pay for performance, which seems like a win/win for everyone. The debate though was very public and quite intense, but, in my opinion, not particularly transparent. I did not see any attempt to solicit feedback and comment from patients themselves about the cost/effectiveness discussion and how patients felt about the situation as a whole. How can we deeply understand customers if we don’t genuinely engage with them?

Can we get the insight we need by relying on third party feedback regardless of how well intentioned that third party may be?

That is one example of the tight rope that associates must walk. They can do a lot of good for their membership and can play an important role in healthcare, but they are clearly in a difficult position much of the time with pharma.

So who is a customer?

Pharma for its part needs to respect the role associates can play and tread carefully when they work with this important stakeholder group. But pharma also needs to reach out, out of their comfort zone, and engage patients in real dialogue and not be tempted to rely on a stakeholder that they have the potential to influence.

There can be no substitute for using ‘the voice of the customer’ (read patient, caregiver, healthcare consumer) to better understand customers and to develop meaningful value propositions in support of their treatments.

It is certainly easier to reach out to one association than it is to engage with your customer base, it is also safer in terms of potential med legal risk and is more aligned with pharma’s skill set.  But....and it is big but, there simply is no alternative to speaking directly with customers to hear directly from them their hopes, needs, wants and expectations beyond just your product, regardless of what industry you are in. And healthcare and pharmaceuticals are no different.

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