Four cornerstones of successful patient engagement (part II)

Mat Phillips

Neovoca Ltd

Follows on from “Is it time for pharma to build a dialogue with patients? (part I)

There is still a long way to go before patients are fully engaged with the decisions that affect their own health, and the majority of people may well still be content to play a passive role with their healthcare providers. Undeniably though, there is a significant shift towards a more collaborative approach to care that puts patients, if not in control, then certainly in a key role as influential partners.

The three levers driving this agenda are: access to information, peer-to-peer connections within patient communities, and the political necessity for governments to give patients greater say, and to offer choice. That the internet and social media platforms are both enablers and accelerators should be pretty clear to everyone, and companies who are agile enough to work with, not against these forces, will gain significant advantage.

How lifescience companies partner with patients, legitimately and beneficially, is a broad and diverse topic and I find it helps to put a framework in place against which progress can be made, measured and improved. By incorporating the following four ‘cornerstones’ to successful patient engagement within an organizational programme, companies can help themselves adapt to what promises to be a major change towards a new model.


Most companies have trust as a critical success factor, and there is no shortage of academic research, dashboards and case studies to help them. In the last few years we have seen a huge increase in policies, programmes and initiatives to improve governance. Apart from a tendency to make some companies very difficult to work with, this is all fine and necessary – but it is not primarily about trust, but about compliance and the avoidance of corporate adverse events! To patients, what matters is not the policies and procedures (important though they are), but the actions, and the quality of engagement that demonstrate if a company really ‘cares about them’. To have any hope of achieving this, two things must be in place:


“…it seems that those who have embraced ‘social’ as a philosophy have also been able to ‘humanise’ their company communications far more effectively.”


INSIGHT – unless there is a very clear understanding of the real issues that matter to patients, way beyond the narrow confines of pharmaceutical intervention, it is impossible for corporations to fully empathise with a patient. The deep insight needed requires a ‘micro-level’ of engagement with patient groups. The large and visible patient organizations are critically important in many ways, but patient care and support is invariably conducted at local level, by volunteers operating out of cramped environments with very limited resources. Truly patient-focused organisations will find a way of talking to, and working with, those groups operating at the coalface. To achieve this requires local engagement with knowledgeable, empathetic staff who are empowered to act as the human face of their company.

TRANSPARENCY – before writing this article I looked at the UK websites of several pharmaceutical companies, and found the level of detail of say, charitable donations, varied significantly. I was left with the sense that some companies felt they ‘had to do’ this, whilst others ‘wanted to’ –and to a neutral observer these companies came across as being far more genuine in tone. Social media is breaking down barriers between companies and consumers, and it seems that those who have embraced ‘social’ as a philosophy have also been able to ‘humanise’ their company communications far more effectively. Patients want, and need, to put a human face to a company –whether that’s via medical information or a corporate blog.


Patient engagement is perhaps the most difficult stakeholder relationship to manage. Professional customers are easily located, their roles are (usually) pretty clear and their needs well understood, whilst any assumptions about patients are likely to be wrong. Therefore, before undertaking any patient-centred programme, significant and rigorous analysis needs to be undertaken- companies need to have a very clear understanding of the strategic intent behind their interaction. This may sound obvious, but I am certain that every company will have examples of failed projects, that, despite the best of efforts, fell down because the fundamental question of ‘why are we doing this?’ was never properly answered.

Good case studies of patient engagement have been historically hard to find, but there seems to be emerging a much greater spirit of sharing across pharma, (the ‘social phenomenon’?) and there were some fine examples showcased at the recent patient engagement strategy awards for those looking to learn from others.¹ One thing all the award winners had in common, was a very clear, transparent and demonstrable ‘clarity of purpose’.


“…unless there is a very clear understanding of the real issues that matter to patients, way beyond the narrow confines of pharmaceutical intervention, it is impossible for corporations to fully empathise with a patient.”



In a recent, and significant survey of 887 patient groups in the UK, CEOs of patient organisations were asked about their experiences of working with industry.² Alastair Kent of the Genetic Alliance UK called for 5 steps to improve pharma-patient group partnerships,

1. Both parties need to recognise that they have mutual interests which can be cultivated to good effect…

2. …But companies need to treat patient organisations as equal partners.

3. Patient groups, meanwhile, should not regard industry as a convenient cash cow.

4. Partnerships should be long term, and not necessarily focused on short-term issues.

5. Formal mechanisms need to be drawn up to allow partners to cross-exam each other without fear of prejudice.

Interesting comments that will resonate across pharma too, but I’d like to highlight the issues of funding and ‘short term-ism’. Since the beginning of the recession 2 years ago, charitable contributions from corporations have dropped by one-fifth across all sectors. Ongoing contributions to patient support groups from PCTs is inevitably going to be up for review this financial year as consortia wrestle with budgets, and patient organisations are going to find it difficult to maintain a level service. There is absolutely nothing wrong with industry helping to fund charities –its partly what ‘the big society’ is about (so long as the right safeguards are in place) but industry has a responsibility to take a considered, long-term approach to the sector. ‘Parachuting in’ to a patient organisation because you have an issue with say, ‘access’, needs to be considered carefully. Actions resulting from short-term thinking by industry will ultimately undermine trust and credibility.


“…companies need to have a very clear understanding of the strategic intent behind their interaction.”



If you believe, as I do, that good patient engagement is critical to the pharmaceutical industry, how much time and effort does your organization spend on relevant training? It seems that there is plenty of ‘online training’ these days to ensure that SOP’s have been read… but that’s ticking boxes, not training! Precious little is available to help staff fully understand, and appreciate, the role of the patient, patient organisations and advocacy. Too often, patient-centred activity is seen as the domain of a small group of people, either in communications, government affairs, medical education or brand teams, and there is no systematic development programme to build in what is fast becoming a key competence, for the future health of the company.

As our industry moves into a new era, where the quality and depth of patient engagement is seen as a key component of an organisation’s strength, it’s time we took a long, hard look at the training and development programmes available, and asked if they really reflect the skills that are needed. Is the patient truly there, or is it just about safeguards?

In summary, patients are beginning to take centre-stage. Building valuable and legitimate relationships with this customer group will require a systematic approach to upgrade organisations from within. Being ‘good at patient engagement’ is no longer optional.


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2 – PatientView Quarterly Summer 2010 ‘What patients think of the NHS and its future’

About the author:

Mat Phillips has 23 years sales and marketing experience in the pharmaceutical industry. Neovoca takes an ‘inside out’ approach –helping companies organise around the new business model, in particular patient engagement and social media. Neovoca is a co-partner in the new Engage 2011 programme, bringing patient groups and pharma together.

How good are you at patient engagement?