Everyone loves a sherpa: Thought leadership in rare disease

Sit in any medical technology or healthcare consulting company meeting and the subject of thought leadership strategy and content is never too far away. For these companies, thought leadership i.e. “subject matter expert points-of-view, ideas and vision, that educate stakeholders about important issues, and help them to solve those issues – without selling” (1) has become a fundamental pillar of corporate communications.

Recent global research by the Information Technology Services Marketing Association (ITSMA) across a range of sectors including healthcare, shows that for business-to-business (B2B) decision-makers, the quality of suppliers' thought leadership is becoming a key determinant of partner choice. Eighty-nine percent of VP and C-suite decision-makers view solution provider content, especially thought leadership, as critical or important (2).

Solution providers are increasing their investment in thought leadership content, publishing white papers, articles, infographics, posts, podcasts and videos (3) to build rapport and relationships with their customers, to strengthen their reputation and to “give something back” (4).

So why is thought leadership so important in healthcare?

To understand stakeholders’ perceptions, attitudes, and usage of thought leadership, M Health recently conducted a series of focus-groups and depth interviews with physicians, patients and health system executives in the USA (5).

The study found 2 key reasons for the rise of company thought leadership in the healthcare space. Time-pressed healthcare professionals and health system executives are struggling with the deluge of new clinical, scientific and technological information and the pace of change. “It's a lot to keep up with, I think that there's increasing complexity and it's hard to keep track of all of the dimensions and layers of change,” said one physician. “It’s just constant evolution.”

In addition, consolidation and the internet mean healthcare provider decision-making never happens in a vacuum anymore. From care pathway redesign and managed departmental service contracts, to the purchase of an innovative scanner or adoption of a new treatment, multiple stakeholders are involved in every decision-making process. Companies must maintain a relationship with all the decision-makers and influencers, ensuring they are aligned on the issues related to purchase. Furthermore, the consequences of these purchasing decisions are destined to be scrutinized by press, government, shareholders and activists, so decisions must be made on the basis of solid, defensible evidence.

Reaching out to subject matter experts (SMEs) and searching for thought leader content can help equip healthcare customers and other stakeholders to make quicker, better decisions in this challenging environment.

Why is company thought leadership important for biopharma?

In biopharma, the concept of company thought leadership is less familiar. More often thought leadership is associated with physician KOLs. However, providing medical education to health care professionals and patients has always been a crucial aspect of biopharma’s mission and is usually the purview of Medical Affairs. Medical Science Liaisons act as SMEs, building relationships, strengthening the company reputation and delivering digestible, relevant information.

Yet, as the M Health Thought Leadership in Healthcare study revealed, HCPs, patients and health system executives still mostly perceive interactions with biopharma companies to be “transactional”. Instead, biopharmaceutical companies need to become “expert partners” to their diverse range of stakeholders. In fact, according to a recent McKinsey & Company report, this is an existential imperative in today’s rapidly transforming, digitalized, democratized healthcare landscape (6).

Defining and implementing a company-wide or disease-focused thought leadership strategy can help achieve this. As well as explaining and contextualizing the complex science behind diseases and treatments, it means developing an issues agenda with topics and points-of-view, co-creating ideas with stakeholders, and deploying customized, multi-channel content to ensure a consistent, high-quality experience of ‘expert partnership’.

Why is company thought leadership important in rare diseases?

The importance of ‘expert partnership’ takes on another dimension within the often close-knit, inter-connected communities of specialists, advocacy groups and patients in rare diseases.

There are more than 7,000 rare diseases, affecting about 400 million people worldwide. These diseases are notoriously difficult to diagnose and treat. Patients tend to enter into a ‘diagnostic odyssey’ taking ~6 years and visiting ~7 physicians before receiving an accurate diagnosis (7,8) and when they get a diagnosis, over 90 percent of these rare diseases still do not have a therapy approved by the Food and Drug Administration (9).

To engage with these rare disease communities, biopharmaceutical companies need to demonstrate the understanding, passion, commitment and added value they bring, beyond commercialization expertise and financial resources.

As one rare disease patient-activist reported “We are accepting and hopeful about all of these new companies that are investing in our disease. But we also know that there wasn't any type of attention being thrown in our direction before there was an opportunity to really gain profit from it.”

Furthermore, to accelerate the time to diagnosis and improve access to quality care, it is essential to engage and educate beyond the rare disease community. It is important to reach non-KOL health care professionals who play an important role in early identification and long-term management of patients with rare diseases. “I'm a generalist, right? I do have a focus, but I feel like it would be much easier if I only saw one disease and kept up with everything there is to know with that particular disease,” as one community HemOnc told us. “I honestly don't know how it's feasibly possible to be able to devote the time reading those in-depth articles about gene therapy or the specifics, although I would like to.”

Thought leadership content can play a big part in maintaining constant engagement and demonstrating a real company commitment within rare disease communities. With the right formats, channels, and timing, it can also educate other stakeholders and elevate the importance of the rare disease, competing for share of mind and resources in the world beyond.

What makes great company thought leadership in rare diseases?

The M Health ‘Thought Leadership in Healthcare’ study identified 4 principles which can be used to integrate customer and brand interests into a single tool for planning, optimizing, and evaluating thought leadership content and campaigns. We call it the BUCR (Brand, Uniqueness, Credibility, Relevance) model. Using this model, M Health also reviewed 20 examples of rare disease thought leadership chosen from biopharma corporate websites to represent a range of topics and formats, from articles and posts to infographics and digital tools.

1.  Brand

The most brilliant thought leadership content is of limited value to the sponsor unless there is some level of company or brand association. While the company’s objectives may sit in tension with the thought leadership imperative “to help them to solve those issues – without selling”, M Health’s research found that stakeholders in today’s healthcare environment are realistic. They appreciate useful content even if it is branded. “I honestly think that pharma knows their disease state very well… I think there's just skepticism as far as if it's one sided or not. I think you'd get that also with a thought leader from a professional organization,” one physician noted.

The rare disease thought leadership examples that were most successful, position the corporate brand and its people as passionate partners. “People I follow online are ‘in the know’” said an expert rare disease patient. “Someone who is a visionary, who really understands the community, what the community's needs are, and is trying to find innovative solutions to answering those needs.”

2.  Uniqueness

For many stakeholders the defining characteristic of good thought leadership is its uniqueness. Above all, they prize original ideas and points-of-view. “I value innovation. I value new information and research… presented in a very creative and different way,” as one rare disease patient put it. From the health system executive perspective innovation is also premium. “I’m looking for original thought. It’s somebody who’s doing something so uniquely. Disruptive. Unique. Invaluable.”  However, even thought leadership with limited uniqueness, such as reviews of what is already known about a topic, may still be considered highly valuable for time-pressed community physicians.

The rare disease thought leadership examples that score highest are those that share early development platforms and science or highlight disease management transformation initiatives. The weakest focus exclusively on synthesis of existing knowledge and have a lack of unique concepts and applications.

3.  Credibility

Credibility of thought leadership rises with the objectivity of the content and the authority behind it. Naturally, the robustness of the sources and data, where the content is published, and the authority and objectivity of the author(s) all play a part in establishing this. “Even company-sponsored trials aren't the same as ECOG (Eastern Cooperative Oncology Group), for example. I think there's always a little bit of a stigma, but I think it also depends on who writes the article and what the background of that person is,” an oncologist told us. “We all have colleagues that wind up in pharma and we've all trained with them and they're brilliant. I don't discount what they say by any means.”

Key techniques to enhance credibility, that some biopharma companies use more effectively than others, include co-authorship of opinion articles and co-creation of tools with KOLs and other external SMEs. Others leverage internal SMEs, showcasing their experience and qualifications, 3rd party publications and carefully referenced supporting data (surprisingly few though!).

4.    Relevance

It’s not thought leadership unless people follow it. Content must be tailored to the role and persona of a clearly defined target audience for them to engage with or be influenced by it. Ideally, topics will address a specific pain point of the moment. “I find very few companies that, to be blunt, have done a good job of identifying our challenges and barriers,” a health system executive stated. Delivering the right level of content in the right format to meet individual stakeholder needs is critical. “A lot of times I have to answer a consulting question or look up a quick piece of information or specific data to discuss with a patient about their particular disease,” said one physician. Length and format are key in these situations. The thought leadership exhibits assessed in our research contained several good content examples that set out to elevate the disease profile by making it relevant to time starved non-KOL HCPs through relevant hooks and innovative formats.

Conclusion

Thought leadership is now a foundational business communications tool which many companies in the healthcare sector are actively utilizing. While providing medical education has always been a crucial aspect of biopharma’s mission, defining and implementing a company-wide or disease-focused thought leadership strategy can help companies achieve ‘expert partner’ status with their diverse range of stakeholders. This is especially true for biopharma companies focused on rare diseases who need to maintain constant engagement and demonstrate a real company commitment to their rare disease communities. The BUCR model can help biopharmaceutical companies optimize their thought leadership campaign content by balancing corporate branding and credibility needs, while maximizing the relevance and uniqueness of the topics discussed.

References

1.    Adapted from Burgess B. Thought Leadership in Practice. Admap. 2013 and ITSMA. How Buyers Choose Survey. 2017.

2.    ITSMA. How Buyers Choose Survey. 2017.

3.    ITSMA. Thought Leadership Survey. March 2018.

4.    Young L. Thought Leadership: Prompting Business to Think and Learn. Kogan Page; 2013.

5.    M Health. Thought Leadership in Healthcare Study. 2019.

6.    McKinsey & Company. A Vision for Medical Affairs in 2025. April 2019.

7.    Blo¨ß S, Klemann C, Rother A-K, Mehmecke S, Schumacher U, Mu¨cke U, et al. Diagnostic needs for rare diseases and shared prediagnostic phenomena: Results of a German-wide expert Delphi survey. 2017; PLoS ONE 12 (2): e0172532. doi:10.1371/journal.pone.0172532 

8.    Engel PA, Gabal S, Broback N. Physician and patient perceptions regarding physician training in rare diseases: the need for stronger educational initiatives for physicians. Journal of Rare Disease 2013; 1(2)

9.    Stub ST. Conquering Rare diseases. CQ Researcher. https://library.cqpress.com/cqresearcher/document.php?id=cqresrre2020012400&type=hitlist&num=0 Accessed February 2020.