EphMRA Online Conference Papers 2020 - Keep up to date by reading the summaries of all our Webinars and online Conference Papers since June.
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EphMRA Online Conference Papers 2020 Keep up to date by reading the summaries of all our Webinars and online Conference Papers since June.
EphMRA Online Conference Papers 2020
Contents
Page 3 Page 21
Powering Market Research: Bringing
A View of the Future: Covid-19
Secondary and Primary Data Together for
and Employee Resilience
Greater Insights
Page 5 Page 24
MR Excellence Award Winner 2020: Making Pharma’s use of digital marketing is often
a Business Impact poor. How can our insights make it better?
Page 7 Page 27
Isolation Nation - Pharma’s role in shaping AI in Healthcare PMR - Smoke and Mirrors or
the new normal a Future Staple?
Page 10 Page 29
Partnering with Patients - How do we ensure Human vs. Machine: Who will win the battle
true collaboration? for insights
Page 12 Page 33
Patient Advocacy Insights from Ultra-Rare
Tell them a story they can’t refuse
Disease Caregivers
Page 14 Page 35
China Forecasting - Primary Market Research
Culture in Healthcare: Developing Awareness
in China, Market Access and Overcoming
and Competence
Other Challenges in Forecasting
Page 17 Page 38
Find your own WHY: How understanding
AI in Demand Planning - How AI is NOT
yourself can lead to better professional
Changing DP
development
Page 19
Looking at Data Differently
Contact us
If you have any enquiries, suggestions or feedback just email us:
Bernadette Rogers, General ManagerEmail: generalmanager@ephmra.org
2
EphMRA Online event - 2 June 2020
A View of the Future: Covid-19 and Employee Resilience
Speakers: Dom Boyd, Managing Director, UK Insights, Kantar and Mandy Rico, Global Director,
The Inclusion Index, Kantar
Drawing on many different data sources including Kantar’s barometer, The Inclusion Index, Dom Boyd and Mandy
Rico presented an overview of the realities of coming out of the Covid-19 lockdown situation and the implications for
customers, products and employees in the move from resilience to a desire to return to normality.
Is Covid-19 creating a new normal for brands and employees?
Covid-19 is not just a disease - it is a disruption which is impacting all of our lives in many different ways and in doing so,
it is creating a new normal. It is also revolutionising the relationship between businesses and employees.
The business crisis
The business crisis created by Covid-19 is a human issue and not just a talent issue. Over three-quarters of workers
say that this pandemic is the most stressful period of their career. It is a time of heightened emotions and there are
four scenarios that can play out: the close call, the panic attack, the recurring nightmare and the brave new reality.
Whichever of these scenarios plays out will require change which is stressful for many people.
The social crisis
The new normal is not normal. The impact of social distancing, blended responsibilities (typically involving childcare
and home-schooling), solitary social-ism and enforced introversion (e.g. the use of video conferencing) brings new
emotions to the fore. Although there can be some positive emotions, such as around the use of video calls in which
people can feel calm and secure, over half of the emotions experienced are relatively negative (i.e. panic, worry, fear,
stress and anxiety). However, there is a positive behind Covid-19 in that it has been a catalyst for creating more caring
societal values.
The brand crisis
The impact of Covid-19 is moving us from a ‘powerful’ cultural era to a ‘responsible’ cultural era.
• The ‘powerful’ era which began in the 1960s has focused on creating better ideas and products.
• This moved through to the ‘possible’ era which was about creating a better self.
• The last decade saw a ‘purposeful’ era focused on creating a better society.
• This has now moved into a sharpened sense of purposefulness which is ‘responsible’ and is about creating better
behaviours and brands’ duty of care to their customers.
This movement to a ‘responsible’ era has profound implications for organisations as well as brands, with a mindset
shift from selling to serving. Value creation in the future will be driven less through ads and more through acts. It will
require a step-change in corporate behaviours and there will be less emphasis on messages and more on enriching
experiences, both for employees and customers. The role of the customer journey will be elevated and there will be
an operational shift from efficiency to empathy which will mark out the brands and businesses that are more successful
going forwards.
The move to a ‘responsible’ era can also be seen as a shift from doughnut brands to wholesome brands, defined by:
• Being built inside out instead of outside in i.e. anticipating and satisfying the customer’s need for wholesomeness and
strong values.
• Having no room for companies to hide with growth through demonstrating role-modelling positive behaviours which
enrich society, employees and customers.
• The start point will be based with colleagues rather than the customer or culture.
• There will be more focus on the employee experience as well as the customer experience before the brand
experience. This is a real turn-around for marketing which has traditionally looked outside for culture and consumers
as a start point.
3
The employee crisis
To accomplish the move to ‘responsible’ successfully, businesses need to bridge the trust gap. Research has found
that there is a significant lack of trust among employees towards their companies in areas including disclosing health
conditions, bullying and being made to feel uncomfortable in the workplace. Businesses must therefore bridge the
trust gap by reacting with genuine empathy and reimagining the measures of success.
What are the watch-outs for companies - lessons learned from Kantar’s Inclusion Index
Kantar’s Inclusion Index allows companies to understand, track and monitor their own progress in how employees feel
about working at their company. This allows leaders to develop and embed diversity and inclusion strategies across
their company. It also enables companies to understand what it is like to work there in the context of inclusion and
diversity.
Pre-Covid-19, the Inclusion Index focused on engagement, belonging, empowerment and perception. Globally, 36%
of employees felt anxious in their jobs. In ‘vulnerable’ diverse groups, this rose to 56%. When looking at employees
with pre-existing mental health problems, the number who felt anxious rose to 60%. Comparing other global sectors
with pharma/healthcare, the differences were:
• Employees diagnosed with mental health issues: 15% (other) and 23% (healthcare/pharma)
• Stress and anxiety globally: 43% (other) and 55% (healthcare/pharma).
• Chronic fatigue: 35% (other) and 48% (healthcare/pharma).
• Lack of stamina: 19% (other) and 26% (healthcare/pharma).
While a sense of belonging was relatively high across all industries pre-Covid-19, there were clear differences between
global pharma/healthcare and pharma/healthcare participants with mental health symptoms.
This all means that now more than ever, we have to understand how to support employees in times of stress and
anxiety. Right now, we are seeing heightened levels of anxiety when people are thinking about their health and that of
their families, as well as coping with their workload and the ‘new normal’. It is therefore more important than it has ever
been to track employees.
We are in a global recession and it is documented that redundancy and other life circumstances brought about by a
recession can trigger depression, anxiety and suicide. In the economic crises of 2007, this correlated to an additional
10,000 suicides in Europe and North America. It is therefore imperative that we track how employees are feeling. The
Inclusion Index provides a way of letting employees know that inclusion and diversity are still high on the corporate
agenda and that their feelings are being monitored.
Key take-outs: Leading inclusively during the new era and the new keys to success
• It is essential to communicate with employees and right now, over-communication is key.
• Trust needs to be enforced within an organisation.
• Communication needs to be delivered in transparent and empathetic ways.
• Proactively asking employees when and how they want to be communicated with will make them feel included in
business decision-making.
• Covid-19 provides a unique opportunity for helping employees discover their own personal purpose.
• The growth mindset should be there to help employees thrive and flourish.
• Encourage staff to make use of their downtime by upskilling themselves through online training.
• Remember that everybody is struggling in some way, including leaders.
• Tracking how teams interact, the needs that they have and how these are evolving will provide important learnings
that can be leveraged.
• Move from a doughnut brand to being a wholesome brand.
• Inclusion and diversity are business imperatives for growth underpinned by strong values and beliefs.
• Proactively share and celebrate examples of your employees embodying your company’s values. Shine from the
inside.
• Covid-19 is a catalyst with positive elements that can help reshape your brands and build a more diverse and
more inclusive culture with a stronger vision for the future based on stronger values and greater connection with
employees.
4
EphMRA Online event - 9 June 2020
MR Excellence Award Winner 2020: Making a Business Impact
Convenor: Rachel Medcalf, Adelphi Research
Mobile: “Don’t Break the Data!”
Speakers: Nadine Winter, Boehringer Ingelheim and Alex West, Instar Research
With an explosion in the use of mobile devices for completing market research surveys over the last five years,
particularly in markets such as China and the USA where up to 40% of the surveys that are fielded are conducted using
mobile technology, Boehringer Ingelheim (BI) worked with Instar Research to evaluate the impact of mobile device
usage on market research surveys.
Business needs and research objectives
• The business needs identified by BI included:
• The impact on market research surveys if they were moved specifically to mobile devices.
• The considerations needed for any variants seen in the data.
• The degree of optimisation that needs to be factored in when using mobile devices and the impact this will have on
the data that is seen.
A key objective was to evaluate device type (PC versus mobile) in terms of any potential impact on the data - the
‘platform effect’. It was also important to assess the impact of setting the same question up in different ways to
optimise it for a mobile device and comparing this to the test group using a traditional survey to see if there was any
data variance. A further objective was to explore how carrying out surveys on mobile devices potentially increases the
engagement of physicians and participation rates.
How the research was conducted
The research was conducted in three stages.
1. A hypothesis testing exercise was run via a workshop which explored what BI thought the results were likely to be
and how this might differ across the team. All of this information was then put into a survey design, picking up on
perceptions of what the market research data might say, including differences, what the quality might look like and
what the physician experience might look like. This provided an essential context for framing the deliverable and the
storyline became more engaging as it sat within the context of what BI thought might happen.
2. The testing phase involved a scheduled tracking arm for one of BI’s brands which was split three ways with 120
healthcare professionals per arm involving:
• A traditional arm with a traditional grid layout.
• A mobile friendly arm, which took the same survey with slight tweaks so that it looked better on a mobile device
while sticking as close to a traditional survey layout as possible. It involved scrolling up and down.
• A mobile first arm which was optimised for viewing on a mobile device, plus a modified survey layout and
sequencing to work better for a mobile. It involved swiping right for yes and left for no.
Considerable effort was made to use a design that was a true enhancement of a traditional mobile survey. In running
the study three ways, it was possible to isolate the impact of the device i.e. the ‘platform effect’. The impact of
changing the way the question looked and whether there was any statistical variance in the data could also be seen.
While the invitation to physicians did not insist that they completed the survey on either their desktop PC or mobile
device as specified, there was a very high degree of compliance.
3. The project debrief involved a myth-busting exercise in the context of the hypotheses that had been developed and
the myths that needed to be busted from the results obtained. A lot of the predictions, hopes and fears expressed
in the hypothesis testing exercise turned out not to be true at the end. For example, although the survey layout
impacted on consistency, there were similar completion rates and the fieldwork times were not improved. These
were surprising findings for BI and they have provided a blueprint that can be overlaid on discussions about their
mobile strategy to give areas for consideration and what they need to be mindful of if they go down this route.
5
Key findings in order of impact
• The mobile trend is only likely to be one way.
• The device type impacts KPI performance, even when it is optimised for a PC versus a mobile device.
• The survey layout did not impact as far as the KPIs were concerned but there were significant differences in how
doctors responded in terms of attributes and grid questions.
• Optimised survey layouts took longer to complete although the post-survey did not yield any complaints from
doctors.
• All three physician groups said that they would be willing to participate in the future, even though one of the groups
took noticeably longer.
• There were no differences in key fieldwork statistics (response rate, screen-outs, drop-outs and length in field were all
the same).
Summary of strategic implications
• Piloting - make sure that the questionnaire is working as it should on both PCs and mobile devices to ensure that
there are no significant differences in data collection or quality.
• Analytics - monitor surveys in terms of the number of completes on PCs versus mobile devices and include this as a
banner point on all data tables.
• Reporting - for each study, there should be an appendix that clearly highlights that different platforms have been used
to conduct the market research as well as key similarities and differences.
6
EphMRA Online event - 10 June 2020
Isolation Nation - Pharma’s role in shaping the new normal
Speakers: Georgie Cooper and Soumya Roy, Basis Health
Basis Health conducted a self-funded study throughout May 2020 which looked at both the short-term and long-
term impacts of the Covid-19 pandemic on the healthcare system and healthcare professionals, as well as the role that
pharma can play in supporting customers to shape and navigate the ‘new normal’.
Approach
The research was both a qualitative and a quantitative study.
The qualitative element involved around 20 healthcare professionals in the UK and US across a broad range of
specialties i.e. not only those who have been involved in acute Covid-19 patient care but also those who are involved
in chronic disease management. 60-minute telephone interviews were carried out and Basis Health spoke to those
involved on an ongoing basis as part of an online diary in which they gave insight into their day to day lives. The
healthcare professionals also took part in a number of creative exercises.
The quantitative element involved 200 consumers in the UK and US who took part in an ongoing tracking study for four
weeks. Part of the discussion was around their interaction with the healthcare system and their thoughts and feelings
about this interaction during the pandemic so far.
Results overview:
The emotional impact that Covid-19 has had on healthcare professionals in the UK and US
Healthcare professionals have gone through a host of emotions on a daily basis as a result of Covid-19. Typically, they
feel out of their comfort zone through being in situations that they are not normally involved with, which can make
them feel useless as a result. They have to make uncomfortable decisions, the results of which can lead to a constant
internal debate as to whether these decisions were the right ones. They can also feel vulnerable, with some having had
close colleagues and family members who have died of Covid-19.
Although this impact is very much felt by frontline workers, phenomenal adjustments have had to be made which
have affected many other healthcare professionals, largely because the healthcare system has had to segregate itself.
Hospitals have had to be split into two in order to manage Covid-19 patients while protecting the health of non-
Covid-19 patients. Healthcare professionals who do not typically work in ICU have had to do ward rosters on Covid-19
wards and this may be a permanent move in some cases to manage Covid-19 patients full-time as part of their role.
Likewise, healthcare professionals who are not involved in Covid-19 patient care have had to take on patients from their
colleagues. They have therefore seen an increase in their caseloads to accommodate and manage shifts.
All of this has meant that healthcare professionals are united by uncertainty and apprehension i.e. moving from a sense
of feeling quite comfortable and an expert in their field, as well as knowing what their day to day and work-life balance
looks like, to a world where they feel overwhelmed and out of their depth.
Anxiety and distress are not limited to healthcare workers. The deterioration in mental health among consumers has
also been pronounced, particularly with women and younger cohorts. Around a quarter or more of consumers in the
UK and US report that their mental health has deteriorated. In the US and UK, this is particularly among 18-34 year-olds
and among women (33% US, 29% UK).
When asked about specific mental health issues, consumers in the US are generally suffering from more anxiety and
insomnia. In the UK, about half of the population reports some feelings of depression and alienation, with this being
significantly higher among women.
While there is a feeling of anxiety and being overwhelmed among healthcare professionals, the study found some real
positives. One of these is a sense of pride for working in a healthcare system and supporting the health of the nation at
this time. There is also a real sense of camaraderie which is felt in the face of a much bigger national loss of confidence.
There is a sense of security in working in a hospital that is doing the right thing when there may be question marks
about some of the decisions being made on a bigger national level.
7
How Covid-19 has drastically changed chronic disease management both in the short and long-term
Various models have been adopted to manage the splitting of Covid-19 and non-Covid-19 patients while also
protecting the latter. In the UK, primary care “hot clinics” have been set up where patients can go before going to
hospital. If they have showed Covid-19 symptoms, they have been able to see a primary care practitioner rather than
having to go straight to hospital. In the UK and US in a hospital setting, some sites were deemed clean to manage non-
Covid-19 patients while field centres were set up to manage Covid-19 patients. Cancer care hubs were also set up to
provide key focus centres to take referrals from other hospitals and ensure that continuity of care could be maintained.
The study showed that it is clear that the management of chronic disease patients has fundamentally changed because
of the pandemic.
• There has been a decline in new diagnoses and there is the sense that there will be a second healthcare crisis post-
Covid-19 which will be an influx of new diagnoses.
• There is a shift in how patients gain access to their medicines. Hospital pharmacies have looked at ways to ensure that
they can deliver medicines straight to the patient.
• The majority of healthcare professionals are either at home delivering virtual consultations or they are going into
hospitals to give virtual consultations. Therefore, face to face interaction with colleagues is severely limited. Team
meetings have been cancelled or are held virtually. Virtual consultations are the gold standard approach to managing
patients and only urgent cases have been seen face to face.
• This is also the case for diagnostic tests and ongoing monitoring. There is a need to make sure that patients do
not come into contact with people and do not come into hospital unnecessarily. Diagnostic tests and ongoing
monitoring are only done in essential cases.
• Only urgent surgery is ongoing and elective surgery has been cancelled. This is reviewed constantly to make sure
that any surgery that has been cancelled has not become urgent.
• There seems to have been a shift in terms of the risk-benefits ratio with new initiations and switches. New treatment
is being held off and not switched because it is riskier to switch treatment when the patient is unable to be seen or
monitored on an ongoing basis.
There have also been some clear shifts in oncology, with treatment now only being focused on patients who are
deemed fit and have curative intent. Treatment for other patients is either being delayed or decisions are being made to
no longer continue it. Oral treatment is being favoured over IV treatment and immunotherapy is the preferred option to
chemotherapy because it maintains the immune system for patients.
Virtual consultations have offered a number of key benefits for both healthcare professionals and patients.
• They are safe and convenient.
• Certain patient types are benefiting, such as younger patients who find it flexible and easy for them.
• Loved ones and family members can also be part of the consultations, offering support.
However, there are a number of areas for improvement:
• In the UK, the IT infrastructure has not always been in place and there has been a steep learning curve. Some
healthcare professionals have needed to go into hospital to carry out remote consultations.
• It is difficult to gauge assessments visually and also to rely on body language. It is obviously impossible to see the
patient if the consultation is done via telephone.
• Ongoing monitoring is very difficult.
• Accessing some patient types can also be difficult, such as older patients or those with mental illness.
How the future is looking uncertain but there is still hope
There are a number of anticipated long-term implications as a result of the Covid-19 pandemic:
• The need to minimise patient contact with the hospital environment. A number of healthcare professionals are
moving to monitoring patients at home and are looking for solutions whereby they can keep patients at home but
ensure that they can monitor them.
• Over half of patients said that they would like to continue with virtual consultations in the future i.e. there will be a shift
in terms of how patients interact with healthcare professionals.
8
• Healthcare providers are balancing the need to de-escalate the current measures in place while protecting the health
of healthcare professionals and the nation. They want to support unseen chronic disease patients and reduce some
of the Covid-19 rosters. They also want to protect healthcare professionals, preventing burnout and mental health
problems, while managing the influx of new diagnoses and referrals and protecting against the fear of a second spike.
While they navigate through the next phase, healthcare professionals will have to identify which patients they see first,
how they make sure they limit their interaction with patients, and how they ensure that they are sharing knowledge on
the Covid-19 pandemic.
The role that pharma can play in helping customers navigate the new normal
Pharma company interaction with healthcare professionals stopped almost immediately at the outset of the pandemic.
Moving forwards, there may be an opportunity for pharma to help customers navigate the next phase of Covid-19
and shift what has been a transactional relationship towards more of a partnership. There are particular areas where
customers may need support:
• Patient materials that can help the patient identify themselves to a healthcare professional.
• Help with IT infrastructure issues around remote consultations, specifically if there is any technology that can help
with visual consultations.
• Remote monitoring and technology that can assist patients in achieving this.
• Mobilising healthcare professionals within specific disease areas to share knowledge around patients in the Covid-19
world.
• The route of administration – subcutaneous and oral is preferred
Summary and key implications
• There continues to be a phenomenal professional and personal adjustment for healthcare professionals both on the
frontline and beyond.
• Customer interactions and company and brand communications should reflect this context to make sure that they are
relevant and optimise customer engagement.
• Desperation has driven innovation and remote working. Remote consultations are here to stay.
• The pharma engagement model needs to adapt as quickly as customers have adapted. Communications need to be
fit to use in this new remote way of working.
• Market dynamism has been significantly impacted. New innovations and switches have dramatically reduced.
Products with ease of administration and home monitoring solutions will be key and will have a longer-term
advantage as remote working will continue into the future.
• There is a real opportunity and potentially a need for pharma to revolutionise the way it interacts with customers by
offering specific and relevant solutions that can help to support them as we move into the next phase of Covid-19.
9
EphMRA Online event - 15 June 2020
Partnering with Patients - How do we ensure true collaboration?
Speakers: Vanessa Pott, Merck KGaA and Trishna Bharadia, Health Advocate and Patient
Engagement Champion
Developing the partnership between the pharma industry and patients/carers was explored from different perspectives
by Trishna Bharadia, Health Advocate and Patient Engagement Champion and Vanessa Pott of Merck KGaA, who both
shared inspiration, guidance and real-life examples of what such a partnership can look like.
The importance of partnering with patients
Patients are more informed today than ever before and thinking of them simply as passive recipients doesn’t match
their relationship with other industries and brands. They want similar experiences with their healthcare to what they
experience in other areas of their life. This makes patient centricity increasingly important in all areas of the healthcare
industry. Pharma companies and regulators are actively wanting to see greater patient involvement and by making
patient partnerships an integrated part of the way that you operate, you will help your clients meet their patient centric
objectives.
Involving patients will make your projects more relevant and targeted, as well as helping pharma learn about customer
profiles and unmet needs. In the Covid-19 era, identifying unmet patient needs is ever more important because the
healthcare landscape is changing rapidly. The pandemic has also presented the opportunity of turning many people
into patient advocates. There is currently a great deal of positive interest in the pharma industry and this can be
leveraged for greater patient involvement. Becoming known for being a patient-focused company can enhance a
company’s reputation and the pandemic has shown that it is even more important to have your finger on the pulse of
what the patient community wants and is thinking.
Collaborating with patients helps to create a more informed and activated patient community. This helps them to
better manage their care and can help with better engagement with the healthcare system. It also creates greater
interest from patients in what is going on in the industry.
Patient groups
The pharma industry often puts all patients together into a single group but not all patients are the same and the patient
landscape is changing. There are three broad groups of patients, all with varying characteristics which determine how a
stakeholder can interact with them.
• A patient by experience is somebody who knows about their own experience with their condition but little else about
their disease or the patient community beyond that. The vast majority of patients are in this group.
• An expert patient is highly knowledgeable about their own experience of their condition but also about the
experiences of others within their patient community and the issues affecting them. They are well informed and take
an increasingly active part in their healthcare.
• A pro patient is an expert in their own condition and also in their patient community. They are able to look beyond
to the issues that face all patients with chronic or systemic illnesses, such as health literacy, the drug development
process and patient engagement. These patients are highly skilled and very knowledgeable. They are also often well
connected with various stakeholders.
The skills, experiences, expertise and breadth of knowledge increases with these groups. Engaging with patients and
patient advocates is different from engaging with patient groups and patient group representatives. They bring different
things to the table but both are valuable. This needs to be considered when you are deciding how/when to engage
with them.
What should you consider when partnering with patients/carers?
Consideration of a number of factors can help you ensure a successful partnership with patients.
• Staying within local rules and regulations is important as guidelines are often used as a reason for companies to say
no. Vendors can play a key role in facilitating a change in culture whereby the rules and regulations are used as an
enabler for fair and transparent collaboration.
10• You should think about your product lifecycle and when it would be appropriate to partner with different types of
patient. Involving different patient groups will depend on the project. It is always important to ensure that patient
involvement at any stage of the project is relevant and suitable for their skills and expertise.
• You should make it as easy as possible, both logistically and practically, for patients to partner with you. Virtual
working often facilitates patient participation, as do flexible schedules and transparent timelines. A partnership needs
to be open and there needs to be honest conversation about the objectives and potential hurdles.
• Transparency throughout a project is key and this includes outlining timelines and milestones where relevant and
anything else which will make the patient’s participation as clear as possible. You should make it easy for patients
to understand what is being asked of them and be approachable so that they feel comfortable to say if something
isn’t manageable or if they don’t understand. Always remember that patients need to be able to maintain their
independence.
How Merck has been partnering with patients
Merck has developed a range of different opportunities for working with patient organisations, patient advocates and
individual patients in three core areas, while recognising that these groups are not the same and will bring very different
experiences and expertise to the table.
Clinical trials
Merck has a forum called the Patient 360 which takes a holistic view of the patient community in the form of an insights
exchange with senior leadership. Leaders from the patient community at large are brought together on an annual basis,
with invitees being experts in their field who can guide Merck’s strategic leadership, strategy development, culture and
mindset. Merck specifically involves patients who they can learn from and who can help them better understand the
patient perspective, rather than people they are working with anyway. Senior leaders meet with patient representatives
for up to two days to discuss top level aspects of the company’s R&D strategy. This translates into a multitude of
projects, including the design of clinical trial protocols and in particular, the patient reported outcomes measure.
Merck increasingly partners with advocacy organisations in terms of education and clinical trial recruitment, as there are
still many misconceptions and fears about involvement. In terms of practical trial considerations, a group of patients are
convened on a specific day/time to work through practical aspects of the trial. Considerations include how they would
like to be approached about the trial, how they will logistically get to the trial, what barriers might arise and whether they
require any assistance. The increasing digitisation of clinical trials is an area that has been informed by direct feedback
from patients.
Annual forum
Merck has an annual forum which brings together patient advocates in dedicated meetings, for example, around
the impact of MS on women. Around 50 people are convened for a panel discussion, from which Merck translates
the points raised into internal actions and a communications strategy, as well as resources developed by advocacy
organisations who attended the meeting and learnings for different countries.
Ambassadors’ Programme
It is important for the culture of pharma companies to reflect patient centricity at their core and for this to be not just
an empty commitment. Patient centric activities need to be part of a strategy and accordingly resourced, so that
everybody within the organisation understands why they are significant. Merck’s ambassador programme involves
patients representing various countries. The programme is externally managed and the ambassadors receive
communications training so that they feel comfortable in answering questions. The programme is voluntary and the
ambassadors come into Merck at different times, enabling employees to hear directly from patients how their lives have
been affected. This can be heart-warming and inspirational for those attending.
Key takeaways
• Without the right culture and mindset, patient centricity is not going to go very far in a pharma company.
• Partnering with patients and carers is crucial in today’s healthcare and business environment. It is not just a nice to
have. Projects get better when you have patients involved at the right time.
• Successful collaboration is about partnering with patients as opposed to merely engaging with them.
• We all have a part to play in changing the industry’s way of operating.
11EphMRA Online event - 17 June 2020
Patient Advocacy Insights from Ultra-Rare Disease Caregivers
Speakers: Alec Pettifer, suUAZIO and Al Triunfo, Mowat-Wilson Syndrome Foundation
The real-world impacts achieved through the successful collaboration between insights firm suAZIO and the Mowat-
Wilson Syndrome Foundation were presented by Alec Pettifer and Al Triunfo, who shared their different perspectives on
the project with particular relevance to the impact of the Covid-19 situation.
Background
suAZIO wanted to collaborate with a patient advocacy group for mutual benefit and to develop a patient engagement
model.
Mowat-Wilson Syndrome is an extremely rare disorder. There are only about 200 cases in the USA. and it is extremely
under-diagnosed. The Mowat-Wilson Syndrome Foundation was founded in 2013, with its Board comprised of parents
and grandparents. Its mission is to help families that are affected by the syndrome, to raise awareness and to support
research, but most importantly to provide family support. The Foundation is a close-knit group and is responsive,
primarily communicating through social media, newsletters and word of mouth, as well as a biannual international
conference and many regional events.
Objectives
suAZIO and the Mowat-Wilson Syndrome Foundation had complementary objectives.
• suAZIO wanted to develop a patient insight survey template and test this live with a patient community, sharing the
results as a case study and thereby demonstrating their business capabilities.
• The Foundation was trying to better understand the unmet needs of its community. It also wanted to attract interest
from the research community as well as improve its grant applications and fundraising opportunities.
Results
The collaboration resulted in an online survey which took about 12 minutes to complete. No incentives or honoraria
were involved to engage with patients/caregivers and the survey was quick, easy to replicate and delivered immediately
actionable results, many of which are particularly relevant in the current post-Covid-19 situation.
Better understanding the unmet needs of the Mowat-Wilson Syndrome community
While suAZIO had ideas about what they wanted to capture, the Mowat-Wilson Syndrome Foundation had considerable
input into the types of questions asked in the survey and the close collaboration resulted in questions from both
organisations being included.
Respite care was of particular interest to the Foundation and the survey found wide variance in its use. Only about 40%
of the participants (caregivers) received any kind of respite care and the cost per month varied widely. This data now
enables the Foundation to seek out those who need respite care but don’t have it, thereby meeting an unmet need in
the community. This knowledge can also be leveraged in terms of expressing a specific need in fundraising and grant
applications.
The rest of the unmet needs were assessed through a “select from the following” list in the survey. One of the most
significant needs was that families were looking for information on the syndrome to share with physicians. They were
looking for a handout and as a result of the survey, the Foundation has started work on a number of prototypes i.e. the
data enabled efforts to be channelled in the right direction immediately.
Digital and mobile health apps were specifically asked about in the survey and it was found that few mobile apps
were being used. Findings on the features that would be valuable in apps for caregivers will be important when the
Foundation reaches the point of developing an app, but are also applicable to other patient advocacy groups.
Mobile health apps have taken on a new relevance post-Covid-19 as they enable people to access information. The
survey identified those who are not engaged on these platforms who may be under-served at this time because they
are not connected as much as others. A similar survey could also be used to discover new or novel unmet needs in at-
risk populations for which underlying conditions such as autoimmune disease and diabetes increase the risk factors for
Covid-19.
12Attracting interest from the research community
The survey validated what the Foundation believed about its own responsiveness. It attracted 109 participants out of
a population of around 200 and this was achieved in under 3 weeks through social media, its community newsletter
and through the networks that each of the board members has built. The strong interest in participation demonstrated
robust recruitment from a tight-knit organisation and could be accomplished because of the strength of the partnership
between suAZIO and the Foundation and their complementary objectives.
Respondents were also asked specifically about their willingness to participate in patient- focused drug development
and clinical research. The results showed a strong core of willing participants for patient-focused drug development,
demonstrating that this was no longer based on anecdotal opinions from the board. Any sponsor organisation that
now wants to engage with the Mowat-Wilson Syndrome Foundation knows that there is a core population that is willing
to participate either in patient-focused drug development or clinical research. The caregivers were also asked if they
would be willing to participate when given an increasing challenge level, such as having a conversation with a rep or
taking part in a discussion group. As the challenge level increased, it was possible to see the percentage that dropped
off in terms of their willingness to participate.
As we need to be more sparing of healthcare resources in the light of Covid-19, the relevance of the willingness to
participate in research monitoring or survey research will become increasingly important with the need to keep people
out of care environments if they are not in an emergency situation. The kinds of approaches and techniques used in
the SUAZIO/Foundation survey can pre-screen those from a patient advocacy group who would pre-qualify for patient-
focused drug development conversations or clinical research.
Expanding grant/fundraising opportunities
Specific objectives are essential when fundraising and the survey provided clearly documented evidence, enabling
the Foundation to reach out for specific funds, such as for respite care. It can now demonstrate to researchers that it
has a willing and active group in terms of participation and it has put the Foundation in a much better position moving
forward to achieve the goals it needs to for its community.
Key takeaways
• The approach taken by suAZIO and the Mowat-Wilson Syndrome Foundation can be adapted to almost any
patient group to meet the needs of the group and related sponsors who may want to have insights about patient
communities whether they be rare, ultra-rare or any other kind.
• A quick and low-cost online survey template can gather patient and caregiver insights if there is close collaboration
between an insights firm and a patient advocacy group.
• An involved and highly engaged community was discovered that can and will respond quickly to similar requests for
insights.
• The package of information revealed by the survey can be shared with researchers and sponsors, putting the patient
advocacy group in a much better position moving forward.
13EphMRA Online event - 23 June 2020
China Forecasting - Primary Market Research in China, Market
Access and Overcoming Other Challenges in Forecasting
Speakers: Julia Liu and Richard Goosey, Kantar Health Division
The opportunities presented by the dynamic and evolving healthcare environment in China were outlined by Julia Liu
before Richard Goosey moved on to take a closer look at the challenges involved in forecasting in this market.
Policies
There are three key policies to be aware of in the Chinese healthcare market:
• Volume Based Purchasing or procurement is very important and will continue to be impactful into the future. It is
organised by the National Health Security Administration which is a reimbursement authority and its main purpose is
to cut the price of drugs with a guarantee of volume.
• Generic Quality Consistency Evaluation cuts the price of drugs while maintaining acceptable quality and supports
Volume Based Purchasing.
• The National Reimbursement Drug List ensures the value of the drug and cuts the price. The Chinese government
negotiates whether drugs can be covered in this list and while the list was previously very secure, this is no longer the
case and a drug can now be de-listed.
Ensuring a value-based healthcare system
China wants to ensure a value-based healthcare system based on three key elements:
• Improving access to healthcare and quality for the Chinese people.
• Controlling cost and improving efficiency. The Chinese government has limited resources as a result of the country’s
changing economic status and because of the evolution of healthcare technology. Spending on healthcare has
increased and therefore there are policies to control the cost.
• Encouraging innovation, improving access and controlling cost. To ensure quality and efficiency, the government has
to encourage innovation.
The impact of Covid-19
The Covid-19 pandemic is still ongoing in China, creating opportunities as well as challenges for the healthcare
industry. Although it has slowed down wider economic growth, it has also accelerated digitisation of healthcare and
enhanced public health. There has been a shift of channels and patients are now playing a bigger role in healthcare
decision-making due to greater use of online platforms. AI is becoming even more important and the pandemic will
also create opportunities for vaccines, IVD and private insurance in the future.
Implications for the healthcare industry in China
• Focus on value, not only the value of existing products but also at the R&D stage and the value of your services.
• Demonstrate to your shareholders the value that you claim and think about creating value for key stakeholders
through marketing activities.
• Embrace new channels and approaches, such as AI, for your products.
• Build innovation into everything that you do.
Overcoming challenges in primary market research when forecasting for a new launch in China
The situation in China is changing very rapidly and forecasting is difficult because of a lack of certainty (“the certainty of
uncertainty”).
14Challenges and opportunities
Forecasting is problematic in China for a number of reasons. The growth rate in medicine spend has been very high
and was around 16% to 25% from 2009 to 2012. This has slowed more recently down to 4% to 9% from 2015 to 2018
and it is predicted to decline even further to 3% to 6% to 2023. However, in spite of this, the Chinese market is the
third largest global market and the opportunities remain huge in that 22% of the world’s population is in China, but the
country’s global healthcare spend is currently only 3%.
When it comes to forecasting, the focus is on the secondary tertiary care market and Tier 3 hospitals within this.
Although they only account for 8% of hospitals in China, they account for 41% of patient volume. At national and city
level, these hospitals are the most important because they tend to drive adoption and recommendations for drugs to be
listed, although Tier 2 hospitals will become more important in the future.
Reducing uncertainty when forecasting
Demand estimation generally aims to quantify the expected uptake and overall potential for a new product and feed the
results into a forecast model.
In doing this, the following need to be quantified:
• The size of key patient segments.
• The speed and size of uptake by patient type, country and respondent type.
• The patient share over time.
• The impact of core components of the TPP and how these impact uptake and patient share.
Understanding key patient segments in this rapidly changing market
• Start your research with a qualitative stage to reduce uncertainty. Outline who your primary target patient is and
identify sub-groups of the target patients. This should be checked against your epi data and other syndicated sources.
• It is advisable to uncover access restrictions. This will affect your uptake curves or reduce the size of your target
population. Be aware of formulary and line restrictions.
• Identify market facts and events that will need to be included in your forecast scenarios and that will change the
uptake.
Reducing uncertainty in your forecast
A forecast project generally goes through a number of stages from estimating demand or preference share through to
adjusting for overstatement, the estimation of order effects, model promotion effects and then overlaying the epi data.
China allows patient case records to be collected and this can really increase the robustness of estimating patient share.
By recruiting physicians who are treating patients currently, details on the patients can be collected and the TPP can
be introduced if it is an established market product. The patients are then introduced and asked if they will be treated
differently with this product in the market. The leads to more reliable peak share raw data.
It is important to be aware of overstatement in China. Overstatement is a bias and China is second only to India in
terms of overstatement.
Another way of reducing uncertainty is to include an analogue product in the forecast. This is really important in China
and you should check the analogue against the six Ps - Product, Patient, Physician, Place, Payer/Price and Promotion -
to see whether the analogue could be matched to the product you are launching.
Reducing uncertainty in terms of data quality
There are several important steps that can be taken to reduce uncertainty in terms of data quality.
• Always translate materials into Mandarin Chinese, as English is not used by doctors. English is only spoken by less than
0.01% of the population. It is also recommended that you back translate to check the quality of the translation.
• It is advisable to include verification questions and logic checks.
• Aim to do a soft launch and check the data and clean it. Using a TPP can be quite complicated. It is advisable to stop
after 10% of the sample to check the answers.
• Recruitment can be very slow and extra time is often needed to be given so that you can check data for quality and
allow for re-recruitment after you have deleted the speeders and cheaters.
15• Try to take respondent fatigue into account. Keep the questionnaire short and if possible, use gamification tools to
make the questionnaire and study more enjoyable to the end.
• Be very mindful of the Cybersecurity Law which came into effect in June 2017. There were 15 enforcement cases
in the first three months alone and the Law will stop your study and the processing of your data, with a fine of half a
million yuan.
Summary of steps you can take to reduce uncertainty in China when forecasting
• Make sure that you talk to the payers.
• Understand what drives value and what the access hurdles are.
• Understand what proof will be required to enlarge the patient pool.
• Understand how physicians make treatment decisions.
• Understand how you can work on the clinical parameters to increase opportunities for your product.
• Understand the market and your sources of business.
• Try to use real-life patients to increase the robustness of your data.
• Make sure you understand why your forecast includes uncertainty and how you have minimised it.
16EphMRA Online event - 23 June 2020
AI in Demand Planning - How AI is NOT Changing DP
Speaker: Dr Sven F Crone, Lancaster University Management School and iqast.de
The role of data in enabling AI in demand planning was the focus of Dr Sven Crone’s presentation, which included a
case study on how Janssen has improved its forecast accuracy.
Background
AI is changing the world in many different areas of life but in spite of the hype around it, it is not changing demand
planning in the supply chain context at the moment. It is nevertheless hailed as the ‘Holy Grail’ in demand planning
forecasting for the supply chain as the demand grows for forecast accuracy and improved supply chain accuracy.
With traditional ways of programming, it was impossible to develop a code and the breakthrough came not with a
regular code, but with an artificial neural network i.e. an algorithm that has layers and mimics the way in which the brain
operates. This is a completely different approach to programming a code.
An image is shown which is learned and an output obtained. Rather than teaching it a code, pictures are shown which
are broken down into pixels. Each pixel is then given a mean colour with a numerical representation which is fed into
a network that does a classification. The algorithm learns the picture and therefore the next time it sees it, it is able to
predict it better, based on a process of showing it thousands of pictures.
The success of AI technology has been driven by:
• The power of hardware which has grown exponentially.
• Exponential growth in the complexity of algorithms which are also growing exponentially in size.
• Datasets which have been growing exponentially because the algorithms are data hungry. Algorithms are now being
trained to recognise everything from cars to pedestrians to movement. There is also exponential growth in the
dataset size.
The need for data in Demand Planning
We are not ‘drowning in data’ but are ‘learning to swim’ at the moment. We therefore need big data in order to train
algorithms that can handle image, voice and speech recognition.
There is a convergence of three drivers, all of which are driving predictive analytics:
• New algorithms.
• More Central Processing Unit (CPU) power.
• More data.
Historically, the datasets that were used to train exponential smoothing and AutoRegressive Integrated Moving Average
(ARIMA) algorithms were based on air passenger data from 1949 to 1960.
However, if we look at the data that is available in industry today, three years of monthly data is mostly available i.e.
today we have shorter data than the data which simple algorithms were based on in the 1960s. We have gone from
macro to micro economic forecasting and when it comes to data storage, we are throwing away a lot of historic data.
A survey on demand planning practices a few years ago found that 72% of companies only used 3 years of monthly
data. They had lots of data sources but these were not consolidated in any way and most data was exchanged by
email, making it not readily accessible. This results in clear limitations when looking at, for example, average seasonality
patterns. There are also sparse data labels in industry and nobody builds up an annual demand signal repository to
learn from unusual things.
There are therefore new algorithms and more CPU power but not much more data, although everyone is hungry for
data in demand planning.
17Case study: Janssen - Creating big data from little data
Janssen has 145 brands and a total of 5,500 SKUs covering different therapeutic areas with different rules and
regulations in the markets in which it operates.
Before 2013, there were multiple planning systems and in that year, they rolled out SAP APO worldwide which resulted
in a reduction in forecasting error by 10%. Some tools were developed with forecasting model selection in 2015 and in
2016, they centralised with a demand planning centre of excellence. A team of analysts with the right tools, techniques
and communication enhanced demand planning and they were able to leverage software tools and training to reduce
forecast error further by another 8%.
At this stage, it was noted that there seemed to be a diminishing return on the effort invested in the forecasting and
there was a need to further improve forecasting in terms of accuracy. To obtain more data for demand planning, it
was moved from monthly to weekly to daily i.e. using the same data but not looking at it monthly quadrupled the
amount of data available. The data could be disaggregated and also aggregated back to monthly data as there was still
a requirement to forecast monthly data. Creating different aggregates of data resulted in more data and more effects.
For example, if weekly data was available, it was possible to forecast more accurately by modelling particular events and
this could then be aggregated from weeks to months.
It is important to recognise that it is not possible to see stock outs on a monthly level but you can see it weekly. You
can then create a time series with a variable binary which creates additional data for newer networks to learn from. The
more variables you introduce, the more you can anticipate weekly data.
In the Janssen pilot study, forecast accuracy increased by a further 10% and it reduced error by 10%. Although this was
a time-consuming modelling approach that was only done on 8 items, Janssen is now looking at AI weekly forecasting
with internal data, aggregating the forecasts up.
Summary
• Start building Demand Signal Repositories now because no system or algorithm can be leveraged until you have the
data.
• AI is enabled by the three drivers of new algorithms, more CPU power and more data, but data is the core enabler.
Therefore, focus on your unique data, not algorithms.
• Data in supply chain planning is often small because historic data is thrown away, historic events are not recorded and
historic disruptions are not recorded.
• Focus on collecting your data.
• You can test AI in demand planning - low-cost pilot studies offer the opportunity to try new algorithms.
18EphMRA Online event - 24 June 2020
Looking at Data Differently
Speakers: David James and Kris Barker, J&D Forecasting
David James and Kris Barker of J&D Forecasting presented an initiative that was started eight months ago to explore
whether the value of data could be increased in the context of forecasting through the use of technology and advanced
analytics.
Objectives and approach
The objectives of the initiative included:
• Improving the efficiency of managing and manipulating the data.
• Making the data more transparent and more flexible so that it could be put into the correct format in terms of
segmentation.
• Looking at whether machine learning can be used in this context.
The first step focused on existing datasets to see if they could be improved in terms of the ability to analyse and visualise
the data. The second step moving forwards is involving the application of predictive analytics so that, for example, it is
possible to be more descriptive and accurate about where a disease has come from and where it is going i.e. correlate
the drivers of the disease.
Current data challenges
Data is often delivered in silos. Epi data is very cross-sectional and very disease-focused but clients are not really
forecasting this way anymore and are often looking across diseases at comorbidities. The siloed approach to delivery
creates a lot of work for clients to get the data into a format they can use, often involving considerable time and
expertise.
A lack of transparency presents a further data challenge. There are many assumptions that need to be made before
treating a patient population and these assumptions are not always transparent. If the assumption or variable changes
going forward, you cannot adjust your epi data to take this into account.
The J&D initiative to date
J&D’s initiative has to date been achieved via two steps:
• Existing data has been formatted to make it more flexible and transparent. A big database was formed by creating
relationships across the different data silos so the data could be manipulated more within the analysis.
• This database was linked this to a data visualisation analytics tool, giving the user the ability to analyse, interrogate and
cut the data in any way they wished and more flexibly than before.
The initiative is ultimately about creating an underlying mass of data using technology that can work for you through
interaction in a more efficient and user-friendly way. It enables the data to be interrogated however you see fit e.g.
incidence, country or gender, with the ability to manipulate and drill down into the data as required.
Applying the initiative to Covid-19
J&D’s database has been created to give flexibility in how you look at the data, for example, going in via a biomarker
and then looking at how patients sit in terms of the biomarker as well as the dynamic growth between each of the
diseases. From this, it is possible to create reports and look at the cause and effect that one disease has on another.
There continue to be many unknowns about the Covid-19 pandemic. Although we don’t yet know what the incidence
is across the general populous, it is known that there are certain age groups and certain comorbidities that have a
higher risk of hospitalisation and mortality.
If you wanted to forecast Covid-19 within a hospital setting, you could estimate the potential patient population that
you would be targeting. You could then run your analysis in terms of the impact the different waves have had on
hospital mortality rates.
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