Patient partnerships: putting relevance into relationships

There are perhaps two ways to look at 2020 – on the surface, it has been a year of pandemic health catastrophe, on a deeper level it has been a year where we finally acknowledged the fragility of health partnerships and the importance of good relationships between the pharmaceutical industry and the patients it serves.

‘New normal’ – on warp-speed

In the past decade, industry has been moving away from a transactional engagement model and towards one more based on collaboration and conversation. We arrived into 2020 with the vision and enthusiasm that a new decade offers to find that as a sector committed to a collective global health endeavour, we suddenly had to work much more openly and cohesively to problem-solve for people infected with coronavirus and to help to shield people with chronic conditions rendered even more vulnerable to the impact of reduced access to treatment and supportive care. That endeavour became essential; it became necessary to build partnerships that are not defined by the volume of the interactions but instead by the value that each interaction brings to all of the stakeholders.

Value over volume

At NexGen we have always focused on bridging new partnerships between patient groups and pharma experts. Our role is to facilitate common ground so that patients’ voices and needs are expressed to the right people within pharma and that the right people within pharma are equipped to ‘actively listen’ to those needs.

“What happens when effective patient engagement becomes the Standard of Care?” – Kish, 2012

Superficially, that might seem a little puerile – after all, opinion leaders should be adept in expressing their opinions and pharma experts should be eager to hear what leaders have to say. But the reality is that very little communication is verbal, and opinions are formed within milliseconds of meeting someone new (the subconscious is primed for survival – can I trust this person?) – so a ‘virtual visual’ through the default to online meetings due to COVID could have hindered us all in the ‘business’ of building patient engagement partnerships.

Fortunately, the concept of ‘value over volume’ (in both senses of the word – numbers and loudness) has been fermenting into the patient engagement organisational psyche for several years (see Figure 1 for an overview of milestones in pharma-patient partnerships).

Pharma has invested significantly in creating ‘active listening’ research and infodemiology platforms and integrating the insights from those across all aspects of the pharma development pipeline. This has naturally extended to the provision of patient platforms and services that enable the value of the patient voice to be heard. Even the quiet ones!

Figure 1. Chronology of building enduring pharma-patient relationships of relevance

milestones in patient engagemnt

“Can you imagine if a drug* reduced the need to go to the hospital by this amount? Again, it would be considered malpractice not to use it” – Kish, 2012

*comparing standard use of statins to standard use of a care programme of patient engagement in a Kaiser study of coordinated cardiac care, which demonstrated coordinated care patients have an 88 percent reduced risk of dying of a cardiac-related cause when enrolled compared to those not in the programme

Putting relevance into relationships

In 2012, Leonard Kish, a health information technology consultant, postulated that “patient engagement is the blockbuster drug of the century”. As such, it would be reasonable to assume that all patient engagement and partnership programmes would be underpinned by a strong development strategy and appropriate investment. After all a blockbuster drug doesn’t make it through the R&D pipeline without a concerted company-wide collaboration. Surprisingly, the data from the progression of this particular blockbuster drug has been slow to emerge.

This has been a catch-22 for everyone working in pharma-patient engagement. Partnerships simply don’t develop nor do they deepen without investment efforts (time, knowledge of impact and money) but until partnerships are proven to work, securing investment is difficult. Where to begin to ratify the relevance of relationships?

This year we launched an initiative to help our clients build such internal relevance for ratification. Under the heading ‘Peer2Peer’ we were supported by industry leaders in patient engagement who not only signed up to the collaboration to share cases studies and examples of good practices but our partner colleagues in pharma agreed to a series of ‘Fireside Chat’ interviews in which they were completely candid about the obstacles to secure internal buy-in to patient engagement programmes.

In every conversation, the relevance of the insights gained from strong patient partnerships to improve multiple business objectives for pharma was highlighted. Furthermore, two Peer2Peer workshops reviewed the evidence emerging to be able to demonstrate ROI from patient partnerships. Further consultation with individual Peer2Peer members and with patient partners was able to generate a summary of the business relevance of patient partnerships as directly improving all aspects of the following:

  • Finessing R&D priorities
  • Product and service design
  • Patient engagement as a unique commodity/therapy
  • Stakeholder interactions
  • Product approval and access
  • Pharma’s role in global healthcare infrastructures
  • Global sustainability efforts
  • Improving organisational psyche.

Specifically, the ‘ROI’ of patient partnerships translates into actual business relevance according to two pivotal studies:

  1. Compared with an investment of $100,000 in patient engagement, the NPV and ENPV increases can exceed 500-fold the investment (Levitan, 2018)
  2. One-year cost savings from these provisions of patient services and interventions were $153,800 with an ROI of 14.79x. (Brixner et al, 2019).


This is a ‘relevance’ equivalent to accelerating a pre-phase 2 product launch by 2½ years, 22% lower discontinuation rate, 29% higher adherence and 35% reduction disease-related medical costs. As a return on investment – these are compelling figures for any pharma CSO, CMO and CFO.

Partnerships require persuasion

Although it may be coarse news to patients, the ‘real world experience’ is also a harsh truth inside pharma walls. Any patient partnerships that lack a business, clinical or real-world relevance return are simply redundant to pharma. Tough times call for tough decisions and honest partnerships run on trust. As we enter a post-pandemic world, therefore, we will all need to keep facilitating partnerships that generate insights for both patients and for pharma because both the medical and the business needs need to be heard and understood. The psychology of persuasion applies here. In 1958, Krugman asserted that it takes three ‘exposures’ to information to spark awareness, curiosity and a decision; Miller’s Rule of Action says consumers need to hear a message seven times before considering purchase. And Smith claims it took 20 exposures to a message before buying a product.

On repeat therefore – patient relationships need to be relevant to pharma based on the insights they provide. And those insights need to inform patient-partner strategy that will deliver better products, services and healthcare solutions for the continuing business of medicine.

About NexGen Healthcare Communications

NexGen Healthcare Communications provides medical communications that create value for clients, healthcare professionals and patients.

About the author

Emma Sutcliffe has been a medical writer and leader in patient engagement since 1995. Emma is head of patient engagement at NexGen Healthcare Communications and a lecturer in patient engagement and social and public health at the University of Cambridge.


  1. Dentzer S. Rx for the ‘blockbuster drug’ of patient engagement. Health Aff; 2013;32(2) (Ref Kish.)
  2. Brixner D, et al. Participation in an innovative patient support program reduces prescription abandonment for adalimumab-treated patients in a commercial population. J Manag Care Spec Pharm; 2019 13;13:1545-1556
  3. Levitan B et al. Assessing the Financial Value of Patient Engagement: A Quantitative Approach From CTTI’s Patient Groups and Clinical Trials Project. Ther Innov Regul Sci, 2018;52(2)

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