myparkinsons.co.uk

Professor Peter Jenner

The Role of Advocacy in finding a Cure for Parkinson’s
Good afternoon. We are incredibly lucky today to be able to start
the programme with a short talk from one of the most prolific,
most well known and most published expert on Parkinson’s
certainly in the UK. Professor Peter Jenner, even in his current
jet-lagged state is a tour de force and a world renowned
just at a scientific level but also takes more time out to speak to
patient groups more than anyone else in the scientific arena that
I know.

This afternoon he is just going to talk to us for ten minutes or so
about his view of the future in Parkinson’s.
Please will you welcome then, Professor Peter Jenner.
PETER JENNER TO SPEAK

Good afternoon everyone. At this meeting today, our hope is
that you will all go away feeling three things:

More positive about Parkinson’s than when you came in.
More informed about exciting research developments than when
you came in.
More influential in the drive to accelerate new treatments for PD.
But before you listen to me harp on about the specific
ingredients for a cure and ways in which we can lend a hand in
the cooking, we are first going to listen to a man in a skirt from
up north. Some of you may know this man as “Wobbly
Williams” some of you know him as Bryn, but whatever you
know him as, this was an exceptional speech, an inspirational
and moving address presented at the Opening Ceremony of the
World Parkinson Congress in Glasgow. This really sets the
scene for today.

‘As a community of Parkinson’s advocates we can be a
resource…….’

‘To be effective there must be cooperation and collaboration
across the whole of the Parkinson’s community. A partnership
of equals’
‘Now is the time to realise the promises of science. Now is the
time to bring our urgency to bear and deliver……’
‘Now is the time for a steady hand, a strong voice and a keen
sense of smell….’
These statements of intent really define what today is all about
and my job this morning is to look at the aspects of the delivery
of new treatments in which we, as people living with
Parkinson’s, can make a difference.
This is particularly pertinent now because we are on the cusp of
what one person has described as a ‘tectonic shift’ in
Parkinson’s at the moment and I think the source of this shift is
coming from two very distinct and new forces in the Parkinson’s
arena.
The first of these forces originates from the science. I don’t
know about the rest of you, but I have always thought that my
Parkinson’s was caused by something not in my head but in
here – call it a gut feeling. Despite imparting this nugget of
information to a lot of people, gut feelings have little credibility
in the scientific world and my rantings have fallen largely on
deaf ears. Evidence in science is everything and although it has
taken me quite a long time to accept this fact – that does not
mean to say I don’t see the sense in it.
For too long now we have been exclusively looking at neurology
for the answers to Parkinson’s to the exclusion of everything
else. But Parkinson’s, as we all know, is not just a condition
affecting the nervous system – it is a whole body condition
which manifests itself in ways too numerous to mention and
seems to be different in everyone. It stands to reason therefore
that the cause of Parkinson’s could be similarly complex and
individual in its pathology.

Perhaps neurology needs to become a ‘new’rology and should
not look at itself in isolation but spread its wings and establish
links with other ‘ologies’.
And at last, there is now a move to investigate Parkinson’s from
a much broader perspective. There are new avenues of research
which focus on immunology, endocrinology and
gastroenterology and from combining the findings from these
new sectors of medicine in the research of our condition, it is
becoming increasingly likely that we will identify many more
pieces of the Parkinson’s jigsaw.

Today, we have Dr John Tadross, a quite brilliant medic who
works with Professor Steve Bloom at Imperial College, London
who in turn is a world renowned specialist in gut hormones. Five
years ago, if we had asked such a person to be involved in our
conference about Parkinson’s, we would have been charged
with heresy and probably burnt at the stake!

I think we can all be hugely encouraged by these new lines of
research which are infiltrating the Parkinson’s scientific
network.
The other significant force in the quest for better treatments is
vested in us, the people who live with this condition and our
ability to influence, to accelerate and to focus the delivery of the
new and exciting science that is out there into the clinic, into
you and me so that we one day soon can feel better than we do
right now.
But why should we do this? Well, if you think about it, the health
sector is different to any other industry as its consumers (we
here in this room) have very little influence over the products.
Parkinson’s is a prime example of this. To date PwP’s have
neither had the inclination nor the platform to play a significant
role in influencing and informing the nature of consumer
demand i.e. our requirements. This seems absurd when the
condition is so all-consuming and no-one apart from those who
experience it from day-to-day can really have any in depth
insight into what it feels like and what type of products might
best serve them. And yet still we as PwP’s feel detached and
disempowered from the scientific community.
To ensure that the best science is developed into the best
treatments with urgency, safety, accuracy and efficacy, the
involvement of informed / expert and energetic PWP’s is
imperative because time is not neutral to PwP’s and in a world of
ever improving access to information; the Parkinson’s
community needs to embrace the enormous potential of the
patient resource and as Bryn said earlier, ‘Now is the time’ for
this.
So I thought the best way of explaining my view on how we can
contribute would be to start by looking at the key constituents of
our quest for a cure for Parkinson’s
So each of these sections can be broken down into further units.
So let’s start with the science.

So these are the ingredients for The Cure Parkinson’s pie but
what can we do to influence these? Well, I think in order to be
truly effective in this task we need the structure, support and
credibility of organisations But we can only be truly effective if such
organisations can provide a relevant and credible infrastructure
which can facilitate leadership, education, data collection and
analysis, and communication. These are the areas where patient
organisations can make the most impact. It is imperative that we
are given the guidance and the wherewithal to be the voice of
the patient. It is our voice and no-one else’s.
Here is a range of areas where patient
organisations can make their mark and contribute to the big
picture in Parkinson’s.
And finally how can we as PwP’s assist? I have identified a
number of areas in which we can directly make an impact on the
speed of development of new therapies.
These are listed on this final chart which I will run through along
with some specific suggestions as to practical methods of
achieving them.

We can develop media opportunities to raise awareness of the
issues that are important to us –
Passion, determination and focus e.g. Organising social or
formal gatherings between academic scientists, pharmas etc
where PwP’s can describe what PD is like.
Taking a moral standpoint e.g. Engaging with regulators to make the case
for fast tracking therapies which have particular potential and
ensuring that the payer understands the real impact on quality
of life.
Self assessment e.g. an increased tendency to assess quality of
life with reference to the people who are living it and, in so
doing, ensuring more precise outcome measurement in clinical
trials. – CLICK
Defining therapeutic needs e.g. encouraging pharma to call on
PwP’s to explain and describe real therapeutic needs rather than
those perceived by others. This should be an ongoing
relationship throughout the development process.
Best practice e.g responding to societal change where users
and consumers have far more influence and impact on change.

Data resource e.g establishing a register to show progression,
similarities, patterns in the Parkinson population. Such data
could be crucial not only in deciphering cause and correct
management but also to compartmentalise clinical trial cohorts
into homogenous groups.
Funding e.g sourcing significant funds PD research. PwP’s are
so often forgotten in terms of the amount they raise both from
their own resources and through other means – sponsorship
etc.
Clinical trial volunteering which is self explanatory.
In the past, many is the time I have been frustrated to the point
of disbelief by the research community’s lack of foresight and
lack of understanding of the ways in which PwP’s can contribute
to the scientific agenda. I remember going to a talk with a similar
title to this one ‘The Role of Advocacy in finding a Cure for
Parkinson’s’ except that it was given by a scientist. This
particular researcher’s vision of advocacy was that advocates
should donate their brains to a brain bank upon death. But I can
tell you that advocacy can do a little bit more than this. Call me’
big headed’ but my brain is far more useful to medical science
while it is still housed within a body which can use it to
communicate.

We, , represent a living brain bank and if you
take the subject of clinical trials as an example, we should, given
the right education and given the opportunity,to be involved in all
aspects of the procedure – from protocol to recruitment, from
patient rights to outcome measurement, from establishing the
concept of informed shared decision making to supplying
information and data about ourselves so that we can be
effectively grouped into the sub-types of Parkinson’s .We need
to enable people living with Parkinson’s to share their opinions
and to communicate this shared voice to policymakers,
opinion formers and stakeholders in the wider Parkinson’s
community because there is a need to challenge current
thinking about the treatment of Parkinson’s. We also need to
raise the expectations of people with Parkinson’s – of care, of
cure and all points in between. Our combined voice can help
break down the barriers to a cure with an urgency which no-one
else can communicate We need to find ways to establish a
better system of analysis of PwP’s in clinical trials so that these
measurements are more in line with the reality of their lives –
personally speaking it is not so important to me that I am able to
do this. What is more important is that I am able to do this.
Raising awareness of the Parkinson’s time bomb and the false
economy of no governmental investment now.
Better communication throughout the Parkinson’s community
through PwP and scientific meetings.
Challenging the system through suggesting more effective
methods of clinical trial and regulatory practice.
We can achieve these 3 things simply by bringing people
together, through establishing contacts and through addressing
what are the priorities for people living with Parkinson’s.
Finally, I’ll tell you what really makes me want to leap out of
bed every morning….. What makes me want to leap out of bed
every morning is the fact that I can’t leap out of bed every
morning, but also the fact that I am becoming increasingly
convinced, that one day I will. It’s simply a matter of when.
How can I be so sure about this? Well the research into gut hormones
advances in genetics. The work going on in gene therapy and GDNF is making potentially revolutionary treatments for Parkinson’s into dramatically improved therapies for Parkinson’s. You can make a difference to breakthrough treatments for this condition if we combine as a team to provide the missing link in the chain of events leading to more effective therapies for Parkinson’s.PwP’s can demand and realise a paradigm shift in the dynamics of the research system having a voice in the process of treatment development,

June 30, 2014 - Posted by Chris | Parkinsons Disease