SUMMIT REPORT GLOBAL PATIENT ADVOCACY SUMMIT · Participants then broke into two groups to work...

SUMMIT REPORT

GLOBAL PATIENT ADVOCACY SUMMIT JUNE 2017

SUMMIT REPORT GLOBAL PATIENT ADVOCACY SUMMIT 2017 2 / 18

Now in its fourth year, the Global Patient Advocacy Summit took

place on 28-29 June in Copenhagen. It brought together 69

people, 36 patient organizations and advocacy groups from 18

different countries and 6 international organizations.

More than 700 million people worldwide are living with

psychiatric and neurological disorders. In his welcome address,

Anders Schroll, VP Corporate Communication and Public Affairs

at Lundbeck, talked about the importance of reaching out to

each other. Reaching out to one person at a time can have a

snowball effect and create a great movement. This can address

discrimination and stigmatization, improve access to better

treatment and care, give the patients dignity and improve quality

of life.

This is also the reason why we chose “One voice – together we

will make a difference”, as the theme for the summit. It is our

hope that with this initiative, we will be able to unite patient

advocacy groups from across the world in order to improve the

lives of people living with psychiatric and neurological disorders.

In her opening remarks, moderator Carolyn Paul, Global

Managing Director of Health at Edelman, reminded the

audience of their important role as advocates and as the most

trusted advisors.

Research shows that advocates are becoming experts in terms

of power, influence, credibility and trust. Patient advocates are

involved in numerous healthcare activities, from research to

surveillance. As key stakeholders, they have a pivotal platform

on which they can influence policy agendas and create greater

awareness.

Anders Schroll told the story behind Lundbeck’s starfish

logo, which represents Lundbeck’s efforts to making a

difference, one person at a time.

As the story goes, a young girl was picking up stranded

starfish and throwing them back into the sea. A passer-by

asked: “Why are you spending so much energy doing

something that is only a waste of time? There are

thousands of beaches and millions of starfish. How can

you make any difference?” Looking at the small starfish in

her hand before tossing it back to the safety of the sea, the

young girl replied: “It makes a difference to this one.”

This story is also the essence of Lundbeck, who we are and

what we stand for. Lundbeck has conducted research and

developed treatments to improve the lives of people living

with psychiatric and neurological disorders for more than

70 years. We know that it takes time. We are often

experiencing more setbacks than breakthroughs, but

gradually, we have been able to help more and more

people, providing us with hope for the future.

This is how we need to work – we need to keep going

against the challenges to create better treatments for

people living with psychiatric and neurological disorders.

69 people

36 patient organizations and advocacy groups

18 countries

6 international organizations

Keep the conversation going on Twitter

#1voicesummit

GLOBAL PATIENT ADVOCACY SUMMIT 2017

One voice – together we will make a

difference

A multitude of voices is louder than a

single voice and may reach different

stakeholders


The summit was a truly collaborative event, enabling the

interaction and active involvement of all participants. It included

inspirational key note speeches, interactive panel debates and

workshops. It provided a forum for debate, reflections and

knowledge sharing opportunities. This approach reflects our

belief that collaboration between patient organizations,

advocacy groups, physicians, societies and the pharma industry

is pivotal. Our shared interest, pooling expertise and resources,

as well as collaborative approach allows us to tackle mental

health and neurological disorders more effectively.

This report contains a high-level summary of key discussions

and contributions from speakers and participants at the summit.

Our hope is that we will keep the conversation going by staying

in touch with each other using the #1voicesummit hashtag, and

by other means.


ADVOCACY AND ALLIANCE: IT’S THE POLITICS THAT

COUNTS!

Fatimah Lateef, associate professor and Member of

Parliament, Singapore

Fatimah Lateef gave a politician’s perspective on advocacy and

highlighted three key focus areas:

• The importance of mainstreaming mental health

• The importance of putting an end to stigma

• The fact that we simply cannot improve our health

unless our mental health is working

You can advocate to anyone; individuals, family, government,

employers etc. The important thing is to speak up and unite

people – even those groups who may not necessarily have a

direct link to mental health. Patient organizations and advocacy

groups should incorporate all life stages in their strategy, and

talk to everyone from kindergarten personnel to senior citizens.

Use all networks and platforms to make connections, discuss

and engage with the public so we can make a change. The

budget for mental health in Singapore is improving, but it still

requires political work.

“There is no health without mental health.”

Mental health problems are causing social and economical

challenges. World Mental Health Day is a way to increase

awareness and advocate for better treatment. To change

policies and regulations, patient organizations and advocacy

groups need to advocate with mental health partners.

However, things do not happen overnight. We need to take one

life, one person, one family at a time.

DAY I

The first day of the patient advocacy

summit focused on advocating for

improved policies and disease

awareness.

Creating awareness of psychiatric and

neurological disorders and their effects

on millions of people in the world is

highly important.

The day outlined the importance of

these efforts, discussed the barriers to

awareness and education, and

highlighted some of the best practices in

this area.


PANEL DEBATE AND CASE STUDIES ON ADVOCATING

FOR IMPROVED POLICIES AND DISEASE AWARENESS

Aagje Ieven, Secretary General at EUFAMI

Fatimah Lateef, associate professor and Member of

Parliament

Fardous Hosseiny, National Director of Policy and

Government Relations, Canadian Mental Health Association

(CMHA)

The panel debate members shared personal case studies of

both successful and less successful advocacy campaigns in

order to share key learnings.

“The three Ps: patients, passion and

persistence.”

Aagje Ieven shared her experiences on a campaign for “Year of

the brain”. One learning was that if you are competing with other

campaigns for funding, you are destined to lose. Instead, save

energy and pick another year where you have ensured political

support and built strong arguments. This takes time.

Contributing success factors:

• Build on previous successful cases

• Use your resources diligently

• Pair your strengths with your opportunities

• Accept that you are not always in control, but believe

in what you do

• Do not compete for funding

Fardous Hosseiny shared a case study where he was to

influence policy and advocate for CMHA’s work, as well as gain

more funding from the Canadian government (Canadian Minds

Matter). He saw results when he applied a logical and research

based approach to his arguments, such as stating the fact that

mental health costs account for 2.8% of GDP in Canada. This

way, he gained access to help people in the early stages of their

disease and was backed by the government’s help, focus and

funding.

Contributing success factors:

• Be well prepared – economic data provides strong

arguments

• If possible, involve healthcare professionals in the

discussions

Fatimah Lateef shared a story about a patient who was greatly

affected by the stigma that surrounded his mental health

disease, and therefore living alone and in fear of society’s

negative view. Local advocacy groups and organizations formed

a partnership to help the patient with his treatment, informing

the community surrounding him and creating awareness. This is

of course very labor intensive, which is why governments need

to accept their important role. But it is more than just

government; it is bottom-up and an inclusive grassroot

movement.

Also, well-known profiles effectively help to remove

the stigma. One example is Prince Harry in the UK, who opened

up about his mental health issues. This has led to a more

transparent discussion, less stigma and a friendlier attitude in

the UK towards mental health issues. The openness of well-

known individuals creates awareness and places mental health

on the political agenda.

“Do not compete for funding.”

How to change mindsets:

• Creating awareness

• Educating and correcting interpretation

• Sharing “real” patient stories

• Arranging talks, seminars, and small group

discussions

• Tapping into other events and other potential funding

• Posing questions to Parliament on a regular basis


SUCCESSFUL FUNDRAISING FOR ADVOCACY

Facilitator: Carolyn Paul, Global Managing Director Health,

Edelman

The workshop began with a discussion around how fundraising

was managed at the different groups. While some of the

delegates had dedicated fundraising teams and others took a

more informal approach, all agreed that they saw fundraising as

something which takes resources away from their core service

activities. Most groups focussed their efforts on individual

donors and very few had tapped the potential of foundations

and trusts.

Participants then broke into two groups to work through a

seven-step framework to develop a fundraising plan. The steps

are: make the case, analyse and plan, impose structure,

research targets, create a proposition, ask for money and build

relationships.

Most discussions focussed on the first step, with both groups

tending to start with very ambitious goals such as “overcome

stigma”. Instead, the groups were encouraged to identify a

distinct, targeted problem, something where the impact of the

donors’ contributions could be measured and quantified.

Interestingly, both groups chose to target schools and young

people for their campaigns. The aim was to educate about

mental health from a young age so that children would know

where to seek help, should they need it in the future. Having

landed upon a very targeted campaign, it was then much easier

to identify a range of donors who could be supportive and

provide funding, as well as knowing how to engage them. For

example, social media companies, game developers and sports

retailers were all key targets.

The hope is to put the plans into practise in the respective

organizations. One of the participants shared a case study with

a similar approach to the seven-step framework and they

received a huge donation from a supermarket company to run a

successful program

The 7-steps approach:

1. Make the case

2. Analyse and plan

3. Impose structure

4. Research targets

5. Create a proposition

6. Ask for money

7. Build relationships

WORKSHOPS

In addition to the speeches and debates,

there were a series of interactive workshops

during the summit.


LOCAL ADVOCACY, GLOBAL MINDSETS: PARTNERSHIPS

AND ALLIANCES

Facilitator: Fatimah Lateef, associate professor and

Member of Parliament

The aim of the workshop was to look into effective ways of

changing the mindset of members of parliament and politicians,

as well as creating alliances. Try to make politicians understand

the rationale and change their perspective. It is also important to

educate the media to make them understand the stigma and

how they can work against it. An example is to use the term

“discrimination” instead of “stigma”. Discrimination is illegal and

easier to grasp for the media.

In terms of alliances it is important to create partnerships and a

common platform to jointly make a bigger impact in mental

health promotion and advocacy. Utilize others’ knowledge and

customize it to your situation.

The Singapore PAG Silver Ribbon has a number of grassroot

initiatives. These include using the radio where people can call

in and talk about mental health problems, arranging internship

programs for students with mental health issues, and making

partnerships with libraries and informing about psychology

books. Silver Ribbon uses Facebook to host live chats with

mental health experts, and they also train church members to

be ambassadors and how to spot mental disorders in their

congregations.

“We have decided we want to help with

mental health disorders, once we make a

choice we need to be persistent – despite

challenges.”

THE UBER MODEL

• U: Understand community needs. Do not assume.

• B: Be mindful of environment especially cultures and

beliefs (Singapore has different people, be attentive

and understand peoples’ background).

• E: Educate yourself on available resources and

explore collaboration with other stakeholders to

avoid duplication of programs and services.

• R: Refer to studies and journals. This makes us

understand the whole situation better while

designing the service.


INCREASING DIGITAL AND ADVOCACY SKILLS IN AN

INTERACTIVE GAME

Facilitator: Murat Zubcevic Senior Mgr, Head of Digital

Interaction and Alejandra Martinez Christie, Digital

Interaction Business Partner, Lundbeck

“Plan forward. “It’s easy!”

This workshop centered around a customized LEGO digital

advocacy game. Delegates were given the task to create a

content calendar of digital activities to fill three calendar months.

Advocacy involves getting key messages through to target

audiences who can make a change. The world is digital – using

online channels to target a specific audience ensures messages

reach the right audience. The players were to plan an advocacy

strategy whilst being faced with various challenges and

opportunities along the way.

Key learnings include:

• Planning is key to successfully communicate messages to

the correct target audience

o Good planning saves time and resources, with

maximum impact

• Events outside our power can have either positive or

negative effects

o Positive: Ride the wave. Be flexible and quick.

Join the conversation

o Negative: Transparently and compliantly be

responsible and responsive

• Use awareness days / meetings to gather and create

content that will be relevant to your audience

o Record an interview that can be sliced up and

used as a mini-series

o Turn statistics into an interesting infographic

o Send out newsletters including social media links

inviting people to follow your activity

• Leveraging existing events

o Don’t think of awareness days as just ONE day

o Rather than a spike on interest, drag it out as long

as possible

• It’s easy and cost efficient!


REAL POWER – LIVED EXPERIENCE

Rob Ramjan, CEO of One Door Mental Health

As an avid story teller, Rob Ramjan took the group on a 180-

year journey depicting the various people and families who lived

with mental health illness, giving a voice to lived experiences.

The organization ALS was established in 1838 and was the

voice of lived mental health experiences at that time. They

fought for legal representation of patients. Most of what they did

then is still relevant today. As we can see, the fight is ongoing.

Recovery will only happen if governments contribute – we still

struggle with governments not taking the proper responsibility.

One Door Mental Health has a lot of interaction with people who

suffer from mental illness. In 1999, they pitched for a training

program for Police Officers – Cop 2 Cop. At first the police were

not interested in doing anything in relation to mental illness.

After having persuaded them to send one policeman to training

in the US for one month, the man came back converted and

today 4000 policemen are trained. The initiative led to a total

change in police culture. In 2015 there were 50,000 contacts

between the police and patients in one jurisdiction.

“We need the passion to believe that our

arguments are more important than

everyone else’s.”

In Australia, the government was cutting out patients and patient

organizations from the decision-making process, even though

patient voices are needed to improve new treatment. We need

to have unity around the issues. Governments can always, if

there is a deviation between sides, use that space to avoid

decisions that could ultimately end in failure. Patients, carers,

doctors and pharma need to be consistent and united, speaking

with one voice.

Awareness is needed to change governmental attitudes, but this

takes time. A minister of health once said to Rob: “I am minister

of health; I didn’t know your organization existed, you need to

come every two weeks so I remember you. You have got to

jackboot your way over the (suffering) babies to get my

attention”.

We need the passion to believe that our argument is more

important than everyone else’s – despite seeming greedy.

“Include legitimate (not “owned”) patient

advocates in all levels of decision-making

that involve patient interests, e.g. design of

trials, marketing practises, data safety and

monitoring boards).”

– Regional patient group specializing in cancer, USA”

DAY 2

This year’s agenda also provided

insights into improving treatment

opportunities, and the second day was

dedicated to patient engagement.

Several interesting discussion

opportunities arose where we

addressed the challenges for increased

patient involvement to create better

treatment for people living with

psychiatric and neurological disorders.


PANEL DEBATE AND CASE STUDIES ON INCREASED

PATIENT ENGAGEMENT

David Gilbert, Director, InHealth Associates


Marc Wortmann, former Executive Director of Alzheimer’s

Disease International (ADI)

The panel discussed the opportunities and challenges for an

increased patient involvement in creating better treatment for

people living with psychiatric and neurological disorders.

David Gilbert has been working in patient and public

engagement for 30 years and is also a mental health service

user. He wanted to add an additional two Ps to the three Ps:

Partnership and Power. Patients bring “jewels back from the

cage of suffering” and these life changing experiences should

be shared in partnerships with others. This needs to be done in

a different way than what is currently the case; people should be

partners and create power in dialogue. If people have been

involved as equal partners and are partners in decisions, trust

and confidence can be enhanced or restored. If people know

why decisions have been made, have been part of the process,

have had the chance to explore assumptions and have been in

a space where honesty about difficulties is apparent, then

consensus is easier.

The panel discussed various challenges to an increased patient

engagement. In the UK, the pharma and R&D engagement

industry is set up to fail because it buffers people away from

where the power is. There are huge benefits to patients being

true partners in the design and delivery of services, and in

improving work and change. People talk about collaboration and

other factors, but it is not happening on macro levels. There are

40 different plans happening in the UK simultaneously.

Rob Ramjan talked about how his organization, One Door

Mental Health, practice positive discrimination i.e. over half of

the members need to have a mental illness. As a result, 80% of

the organization’s members have a mental illness, the rest

consists of carers. They have a wide range of people who are

interested in providing their input, but they must be paid at a

consultant fee range – they are the experts.

The group discussed the challenges for patients to set

outcomes. In the UK, they are starting to see a network of

organizations that come together to develop a measure (MSK

HQ) co-designed with service users and professionals. This is

more common within research; in the UK there is a rise of

quality improvement, experience based design – especially in

R&D tools and service improvement.

“We are still working in an old paradigm;

it is still “them and us”, organizations vs.

governments. We need to be a united voice

for a cause.”

Marc Wortmann argued that effective advocates need to have:

• Facts – credible reports.

• Face – patients and their relatives need to advocate.

• Education – educate people and create alliances.

• Alliances – the senior people are often the decision

makers, find your allies here, often they have personal

experiences.

• Persistence – every new step and achievement needs

to be turned into actions, this takes time.

We are still working in an old paradigm – it is still “them and us”,

organizations vs. governments. We need to be a united voice

for a cause regarding a wide range of common denominators,

such as dignity, burden for carers etc. This paradigm reinforces

leadership on a political level – instead of having a bottom up

approach.

Finally, the panel debate discussed how to provide a platform

for potential patient leaders that delivers fundraising skills and

other training. It is challenging to find patient leaders i.e.

patients that are also leaders that can be more involved on a

strategic level. Education is key.


PATIENT ADVOCACY FOR BETTER TREATMENT

Facilitator: Carolyn Paul, Global Managing Director Health,

Edelman

The workshop kicked-off with a discussion about the gaps in

treatment and how patient advocacy can address this. It soon

became clear that the most pressing needs were in treatment in

its broadest sense, i.e. support and engagement beyond the

healthcare professional. A concerted and coordinated approach

to social factors, such as housing and employment, was a clear

priority of the participants as issues in these areas can have a

huge impact on peoples’ mental health. Holistic support hubs

were considered to be a tremendous solution, with models from

Australia and Canada used as examples of what can be

achieved.

“The most pressing needs are in treatment in

its broadest sense, i.e. support and

engagement beyond the healthcare

professional.”

The workshop participants were divided into two teams to take

the conversation further. One group chose to tackle the need for

better support for carers as one area where patients could be

more proactive. This would require a two-pronged approach.

Firstly, addressing at grassroots level with practical support for

all areas of caregiving. Secondly, at policy level where huge

financial savings, which informal caregiving deliver for

governments, could be used to encourage policy change and

funding for increased supportive services.

The second group discussed patient-centric models of care and

identified the lack of inter-professional interaction and education

as a key barrier. Interestingly, the group suggested that the

patient advocate or volunteer could play a considerable role in

resolving this. It was suggested that patient advocates could,

with sufficient training and support, act as the bridge across

different disciplines and provide the bridge for all dimensions of

care.

WORKSHOPS

The workshops on day 2 focused on

increased patient involvement in creating

better treatment for people living with

psychiatric and neurological disorders.


PATIENT ADVOCACY AND DIGITAL INFLUENCE

Facilitator: Mike Barlow, Founder & CEO, myHealthPal

Group

Mike Barlow’s workshop focused on patient involvement and

digital influence.

Technology has been a key driver in changing the healthcare

landscape in general. No longer are patients in isolation; you

can now go online and engage, learn, communicate with

patients around the world like never before. Technology has

broken down barriers, it has made patients realize that they are

not alone and that they have a voice. In a way, it has

democratized healthcare. From social media to now wearables,

sensors and quantified self-movement, patients are

groundbreakers.

Digital solutions will not improve patients’ engagement alone.

They should want to do something. Or they should be

encouraged to look, listen and then decide. Once a patient feels

that the time is right to engage, then digital solutions open a

whole new world. From something as simple as a Facebook

group to a more sophisticated platform like Health Unlocked or

PatientsLikeMe, digital can really change patients’ lives. First

and foremost, it starts with the patient deciding.

“Feel less like a patient, more empowered”

Often, caregivers are the true unsung heroes that digital

solutions can also help. Just being able to connect to others in

the same situation and share experiences to know that you are

not alone is a big support. Technology can also enable

caregivers to receive information more quickly to assist in the

care.

The group started out brainstorming about how digitalization can

help people. They discussed sensor technology and how it can

deliver an improved quality of life for patients, whilst at the same

time deliver real time and relevant data to the healthcare

profession so that they can make decisions to prevent things

happening. Health sensors programmed for each personal

situation that could indicate if a patient has not taken the

medicine was discussed. Creating customizable response

strategies, such as telling friendly messages to contact circle of

acquaintances, gaming features with reward systems, and

personal health graphs were also discussed. Devices should be

developed to insert information, recap to find key learnings to

improve for the next day, and display a graph of the progress.

“Technology has broken down barriers; it

has made patients realize that they are not

alone and that they have a voice.”


PATIENT INVOLVEMENT IN R&D

Facilitator: Marc Wortmann, former Executive Director of

ADI

The workshop focused on patient involvement in the R&D

process. The topics were:

- Recruitment in clinical trials

- Patient expectations trial process and outcomes

Recruitment is a barrier in many Alzheimer studies, and this is

most likely the case in many mental health and neurological

areas as it is not seen as a treatment option. This delays

development of new medications. Industry and patient

organizations can work together from different points of view,

but with a shared interest in finding solutions.

In the cancer area, it is much more common to refer to trials.

Rare disease areas (or orphan diseases) are ahead of others,

because without help from patient organizations and advocacy

groups, studies hardly find subjects.

Patient expectations are not always well understood. The

following areas pose challenges:

- Information about purpose, progress, outcomes

- Getting to the trial site might be a problem (support

with transport)

- Finding the way in hospitals when you have dementia:

need support of caregiver

- Participation in open label extension

- Participants often not informed about results

The group identified several barriers for increased patient

involvement including:

- Accessibility: research is only being done in the big

cities (Spain)

- Availability: there are no clinical trials due to all drugs

being imported (Indonesia)

- Approachability: clinical teams can be a barrier with

very junior staff (Australia)

- Accountability: patient advocacy groups are often

asked for recruitment but are given very little insights

as to what the research includes

Regulators are open for an increased patient involvement but

the organizations need to be more proactive in creating the link

to patients.

Digital technology could also play a more important role in

measuring the progress in studies with more frequent

measuring.


AN INTRODUCTION TO LUNDBECK RESEARCH

Niels Plath, VP Synaptic Transmission, Lundbeck Research

Niels Plath gave insights to Lundbeck’s research within

schizophrenia and depression.

When someone is suffering from depression, it is due to a

specific biological process. That is where a treatment interferes

and the reason why a drug has an effect. He also gave the

example of a patient who did not respond to pharmaceuticals

and where an insertion of an electro-implant that stimulated a

tiny area of the brain relieved symptoms.

One challenge in our field of research is that we don’t know

which biomarkers can be measured. Patient populations with

psychiatric and neurological disorders are diverse, they all have

different symptoms, clinical courses etc. There is not one drug

that works for the entire population.

Biological and clinical factors serve to stratify subpopulations i.e.

to sample each subpopulation independently. Biomarkers are

required to identify subpopulations.

Prescribing the right drug to the right patient will increase

response rate and response efficacy (“Precision Medicine”).

There were several questions from the audience. One delegate

asked how many types of schizophrenia there are. Niels Plath

answered that there are “not 100, but if you can divide it into 3

groups we have come a long way”. He also said that we are

very optimistic regarding further incremental development in

treating depression. In relation to a question about how

Lundbeck works with bid data, Niels Plath said that it is a

significant aspect of our work. There is a huge opportunity

where the storage of data is no longer an issue and the analysis

of data is now applicable. Watson of IBM and similar tools will

help us analyse data with our biological and therapeutic

knowledge.


THANK YOU FOR COMING

It has been a pleasure spending two days in the company of

committed and passionate representatives from patient

advocacy groups working towards the same goal: to improve

conditions for people living with psychiatric and neurological

disorders.

We hope to see you at the Global Patient Advocacy Summit

2018.

“On behalf of CMHA, I wanted to thank you for inviting us

and a big shout-out to your team for being such gracious

hosts. I believe summits like this play a critical role in

advancing the mental health agenda and together as an

alliance we will be able to advocate for parity and disease

awareness”.

Fardous Hosseiny, MSc, National Director, Public Policy,

Canadian Mental Health Association

“I enjoyed the Summit and got a lot from it. I am particularly

interested in what is being planned through Singapore and

will be in touch with them to see how we can assist with

their meeting next year. Thank you for a well organised,

deeply interesting and productive Summit”.

Rob Ramjan AM, CEO, One Door Mental Health, Australia

“The summit inspired me to do a local patient summit in my

country”

Zamo Mbele, SADAG, South Africa

“This was such an excellent session and great value to

share experiences with peers in the same field. We had a

really productive session and came up with a fully-fledged

fundraising plan”

From the post summit survey

“The summit gave such confidence and hope”

From the post summit survey


AGENDA DAY I

Time Wednesday 28 June

10.30 Arrival, registration and lunch

12.00 Welcome

Anders Schroll, VP Corporate Communication & Public Affairs.

12.15 Introduction to the summit and the delegates and icebreaking session

Carolyn Paul, Global Managing Director Health, Edelman

13.00 Advocacy and Alliance: It’s the Politics that counts!

Fatimah Lateef, associate professor and Member of Parliament

13.25 Panel debate and case studies

Aagje Ieven, Secretary General at EUFAMI, Fatimah Lateef, associate

professor and Member of Parliament, Fardous Hosseiny, National

Director of Policy and Government Relations.

14.15 Lundbeck and patients

Jacob Tolstrup, Executive Vice President.

14.30 Coffee break

15.00 Setting the scene for the workshops


15.10 Workshops with coffee and fruit

• Successful Fundraising for Advocacy

• Local Advocacy, Global Mind-sets: Partnerships and Alliances

• Increasing digital and advocacy skills in an interactive game

17.00 Opportunity for exchange of knowledge and ideas with other colleagues

18.30 Dinner


AGENDA DAY 2

Time Thursday 29 June

8.15 Morning coffee

8.30 Good morning and recap from day 1


8.45 Real Power – Lived Experience


9.10 Panel debate and case studies

David Gilbert, Director, InHealth Associates, Rob Ramjan, CEO of One

Door Mental Health, Marc Wortmann, former Executive Director of ADI.

10.00 Coffee Break

10.15 Setting the scene for the workshops


10.25 Workshops

• Patient advocacy for better treatment

• Patient advocacy and digital influence

• Patient involvement in R&D

12.15 Lunch

13.00 Key findings from the workshops


13.30 Walk and talk and presentation at Lundbeck’s research facilities.

15.00 Closure and end of summit

Anders Schroll, VP Corporate Communication & Public Affairs and


The aim of the Global Patient Advocacy Summit is for

international and local patient advocacy groups to meet and

build relations, to exchange knowledge and insights and

examine opportunities of cooperation with different

stakeholders. In addition, participants can gain inspiration from

best practices in the wider disease community in order to raise

awareness about, and making a difference for, people living

with mental health and neurological disorders.

People living with mental health and neurological disorders are

our joint field of interest. For many years Lundbeck has been

committed to addressing challenges within psychiatry and

neurology and ensuring relevant support to patients.

The Global Patient Advocacy Summit has become a natural

extension of our work to improve the conditions of people living

these disorders, their families, physicians, and the community

around them. We call it Progress in Mind.

H. Lundbeck A/S

Ottiliavej 9

2500 Valby

Denmark

Corporate Communication

Tel. +45 36 30 13 11

[email protected]

www.lundbeck.com

CVR number 56759913

SUMMIT REPORT GLOBAL PATIENT ADVOCACY SUMMIT · Participants then broke into two groups to work...

Documents

Transcript of SUMMIT REPORT GLOBAL PATIENT ADVOCACY SUMMIT · Participants then broke into two groups to work...