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Self forming groups the new form of patient advocacy

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Pharma working with traditional patient groups may look like old school or so yesterday.  Inspiration for this blog post comes from  the New York Times article by Tara Parker-Pope, How parents harnessed the power of social media to challenge Epipen prices (August 25, 2016). Today self forming groups is the new form of patient advocacy.

Q1: What is the difference between self forming patient/consumer groups and traditional patient/advocacy groups?

With the advent of internet and social media, self forming groups have been coming together to organise online. They tend to quickly organise themselves around a certain cause or issue, driven be a passion and motivation and tend to generally be short lived. Jackie Huba and Ben McConnell referred to these consumers and their voice as Citizen Marketers. Traditional structured patient advocate groups on the other hand can be defined as “an individual or an organization, often, though not always, concerned with one specific group of disorders. Typical advocacy activities may include: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, support and education of patients, survivors and their carers”.

Q2: How are they different in driving patient advocacy?

Traditional patient groups, which are built as traditional hierarchical organisational structure, which in todays internet world can slow decisions. Membership, plays a key role in sustaining these patient organisations and as political clout. Also fundraising is a cornerstone to sustainability and several, if not all, are bound to pharmaceutical sponsorship. Whereas self forming groups come together when there is a need, have no internal reporting and no binds to sponsorship. In fast paced world of internet and social media they are free and more quick to respond to consumer needs.

Q3: Should pharma pay attention to these groups?

They are a force with which pharmaceutical companies must learn to contend with. The self forming groups have the ability to gain momentum very rapidly and have the potential to bring about change. Through crowdsourcing, broadcasting or making our opinions concerns heard across the internet or through social media can come about very easily. Crowdsourcing can be defined as:  the process of obtaining needed services, ideas, or content by soliciting contributions from a large group of people, especially an online community, rather than from employees or suppliers. Each person’s contribution combines with those of others to achieve a cumulative result.

Q4: How could pharmaceutical companies work with these new groundswell groups?

Usually these groups are initiated by one influencer which has the capacity to bring together a crowd, through crowdsourcing. One way pharma could approach these groups would be to identify and build a relationship the influencer. Responding or engaging, which pharma is still trying to figure out, to the online discussion would also be vital. I also believe there is a possibility to work in both real and virtual spaces.

Q5: Do self forming groups have success?

Yes. Just take a look at the recent #epigate. A perfect catalyst for change initiated by one influencer, who had strong feeling of rage and anger, created a kick ass hashtag, and through crowdsourcing, was able to raise awareness and challenge epipen prices.

Resources:

How parents harnessed the power of social media to challenge Epipen prices. Tara Parker-Pope. New York Times August 25, 2016.

Citizen Marketers, a book by Jackie Huba and Ben McConnell

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