Designing and packaging new treatments for Parkinson’s
Sticking to a medication schedule can be particularly difficult for people with Parkinson’s, so this must be considered when designing and trialling new treatments. We have been working alongside people affected by Parkinson’s to do just this ahead of a clinical trial.
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When developing a new medicine, scientists need to think about how it will be delivered to the body, and how often people will need to take it.
The form of a drug — whether it is a tablet, capsule, syrup, injection, or something else — affects how it works and how long it lasts in the body. For example, insulin — used to treat diabetes — has to be injected into the body because it can’t survive in the stomach long enough to travel to where it needs to get to. When developing a drug, scientists must tinker with its chemical properties in order to work out which form is likely to be most effective.
Importantly, scientists also need to think about how practical the drug is for people to take. If the frequency of doses or way the drug is taken is impractical, people will be likely to miss doses, meaning that the medication won’t work as it should do. This is potentially catastrophic for clinical trials, which are designed to test whether or not a new treatment is effective.
In Parkinson’s, we know that medication adherence — taking drugs at the right times and on the right days, as prescribed by doctors — can be difficult. Studies have shown significant variation in how people take their Parkinson’s medication.
There are lots of reasons why people may struggle to take their medication as prescribed, including:
- medication schedule not fitting into their daily routine
- having to juggle multiple medications
- forgetfulness
“I have found that [my] Parkinson’s medication is sometimes particularly difficult to manage, as it has to be taken at specific times in the day and linked to food intake. This can be awkward when you have a busy lifestyle.”
— workshop attendee
It is therefore crucial that scientists work with people affected by Parkinson’s early on in the research process to develop new medicines that are both effective and practical for people to take.
“Medication is such a dominant part of the condition and impacts on how I manage my life with Parkinson’s. Anything that makes that simpler would be welcome.”
— workshop attendee
The next chapter in a pioneering partnership
For the last two years, we’ve been working with global biopharmaceutical company UCB to help their research teams involve people affected by Parkinson’s in their work.
“Inspired by patients, driven by science”, UCB are committed to working with patients throughout the process of developing new medicines to ensure that they are focused on what matters most to people living with health conditions.
In 2018, we hosted a workshop with UCB to discuss the design of a clinical trial to test a new treatment for Parkinson’s. Following the success of this, we hosted another workshop in June 2019 — this time to discuss the form of the medication to be used in the trial, and how it should be packaged.
The workshop
UCB is developing a new medicine for the treatment of Parkinson’s. They wanted to engage with people affected by Parkinson’s to learn about their experiences of taking medication, with the aim of making it as easy as possible for those taking part in the clinical studies. Although the medicine is still in the early stages of development, UCB considered it fundamental to start these discussions early on in the process. This will allow these crucial insights to be fed into the trial planning as early as possible.
The workshop involved 14 people affected by Parkinson’s, including two partners of people with the condition. The workshop was chaired by an external facilitator, and members of staff from Parkinson’s UK and UCB facilitated discussions.
The majority of the day was spent in small groups discussing the practicalities of taking medication, impact on daily life and experiences of different types of medication and packaging. Each table had 3D printed samples of different size capsules and tablets, and a selection of the different types of packaging to aid discussion. At the end of sessions, attendees were asked to vote on their preferred medication form and type of packaging.
What did we learn?
It quickly became apparent that sticking to medication schedules requires people to make significant adjustments to their daily lives.
“I have had to find a regime that works for me and that is (almost) foolproof, so I don’t have to spend time worrying about whether or not I took my tablets.”
— workshop attendee
Many people said that they found sticking to medication schedules challenging, and highlighted a number of practical difficulties:
- Tremor and dyskinesia can cause people to drop tablets or capsules, which is frustrating. Retrieving them can also be a challenge — very small tablets are hard to grasp, and round ones often roll away.
- Coordinating schedules for multiple medications is difficult and requires a lot of organisation. Many people take medication for conditions other than Parkinson’s too, which adds to the burden.
- The absorption of Parkinson’s medication into the bloodstream can be affected by food intake. Having to plan meals around medication times is annoying, and can be particularly troublesome for lunchtimes.
- Taking medication when outside the home is inconvenient, and requires forward planning. There is little space for flexibility and spontaneity.
And it’s not just the practical elements that are challenging. Taking medication is mentally draining, and causes anxiety for some people. It is also a constant reminder of having Parkinson’s.
“If I could forget about taking tablets and having Parkinson’s for even one month…despite having [for example] a three-hour hospital treatment…that would be the dream.”
— workshop attendee
Medication preferences
When it came to the form of the new drug, people voted overwhelmingly in favour of a tablet or capsule over a liquid. People said liquids were less practical, and they also had concerns about accurate dosing.
There was a slight preference for tablets over capsules because they are less noticeable when travelling down the throat — though people identified a number of ways that tablets could be improved to make them easier for people to take.
People much preferred medication to be packaged in blister packs over bottles, but again there were a number of ways they felt blister packs could be improved — for example, having blisters in multiples of seven would help people keep track of doses taken more easily.
A common theme that emerged during the day was the environmental impact of medications, which is increasingly something that people across society are concerned about. Some people felt that companies had a responsibility to consider this in their manufacturing. Biodegradable packaging would help people feel more at ease.
Some companies are already working on sustainable solutions to medication packaging.
A valuable experience for all
The workshop provided valuable insights into the complexities of taking medication, and further emphasised how vital it is that companies consult with people affected by health conditions throughout the drug development process.
The day-to-day challenges of taking medication have a significant impact on people’s lives. Decisions about the size of capsules or number of tablets in a blister pack should not be based solely on manufacturing needs or ease — it is crucial to discuss the practicalities with people. Seemingly minor considerations can have a major impact on how easy it is for people to stick to their medication schedule.
People affected by Parkinson’s also gained a lot from the day:
“It has given me further knowledge and understanding of the pharmaceutical industry. It felt very valuable to contribute to research.”
“I did not think that we would have so much interaction with the UCB team which made the workshop much more valuable.”
“I wasn’t sure what I’d be able to contribute but found everyone, including me, had lots to say.”
“The workshop made me feel empowered and more positive about future treatments.”
Read more from Gillian and Neil, who attended the workshop and have written about their experience.
What’s next?
The workshop provided invaluable insights for the UCB team, which will help the company design better medications that are easier for people with Parkinson’s to take.
“The collaboration with Parkinson’s UK to develop this patient insight workshop has meant that our scientists are better connected to the challenges of those living with Parkinson’s when taking their medications and has helped inform their thinking around drug development. A big thank you to Parkinson’s UK and all those that participated in the workshop”.
Francoise Lurquin, UCB Development Lead
Parkinson’s UK is continuing to collaborate with UCB — and other companies — to help ensure that new treatments are developed with people affected by Parkinson’s. Because we know that people with the condition have a vital role to play in this process.
Scientists can supply their specialist knowledge, healthcare professionals can contribute their clinical experience and regulators can provide the necessary advice and guidance. But without the involvement of people affected by the condition, Parkinson’s research will keep coming up short in delivering groundbreaking new treatments.
To succeed, we all need to work together. That’s why — through our patient and public involvement programme — we’re taking the lead in bringing people affected by Parkinson’s together with researchers and companies to improve Parkinson’s research. And you can join us.
If your company is conducting Parkinson’s research, we’d love to speak to you about how we can support you to work with people affected by Parkinson’s.
And if you are someone affected by the condition, get in touch to find out how you can get more involved.
Email us at researchinvolvement@parkinsons.org.uk.
