How do we stay impartial?
We want to keep the Tech Guide impartial, and focus on the views of people affected by Parkinson’s. This is how we do it
Parkinson’s UK is a charity that supports people with Parkinson’s in a wide range of ways. We fund medical research, support the development of real-world treatments. We campaign for change in the NHS and support doctors, nurses, and therapists who work with people with Parkinson’s. We also help individual people living with Parkinson’s directly. Parkinson’s UK fundraises from a wide range of sources, including both corporate and individual giving as well as commercial sponsorship of Parkinson’s UK activities and events.
All of this activity means we have ongoing relationships with people and companies who may go on to develop devices and apps to help people with Parkinson’s. It’s very important to us that we don’t allow these relationships to influence the reviews we publish in the Tech Guide, the devices and apps we select or how we describe them. .
This document outlines how we ensure that the Tech Guide maintains its impartiality, how we focus on the views of people affected by Parkinson’s and how we prevent any undue influence from any person or organisation with whom Parkinson’s UK might have an existing relationship.
Full disclosure
First, and perhaps most important, we will always make clear next to any product review in the Tech Guide whether there is any personal or commercial connection that might affect the impartiality of the review . We’ll also make clear the steps we took to make sure the review is independent and unbiased. This means that you don’t have to just take our word: you can see exactly where there’s a relationship and what that relationship is, and decide whether you think we’ve done enough for you to rely on the review you read.
Community led
Through all our work on the Tech Guide, we aim to serve people with Parkinson’s first and foremost, along with their families and carers. The Tech Guide is therefore steered, overseen and based on the views of people with Parkinson’s in several ways.
Steering Group
Our Steering group of around 10 people with Parkinson’s and family members sets our direction, making sure that we deliver the right things and solve the right problems. They meet twice a month by video to check on the work the team is doing, to review our progress and to ask the hard questions we might not otherwise think of. Every decision, from the choice of products to review to the way we structure the reviews to the way the Tech Guide works, are checked and challenged by the Steering Group.
Specialist Panel
To make sure that our product reviews are of high quality, we have a panel of specialists (doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, and academics). This panel checks each product review before it’s published to make sure it’s free of errors and bias. They meet monthly to suggest improvements that will make the Tech Guide even more useful to people living with Parkinson’s and to professionals.
Reviewer Pool
Our product reviews themselves are based on feedback from half a dozen people with Parkinson’s who’ve used the product over a 4-week period. We give them a detailed list of questions to respond to, and the review is based entirely on their experience and feedback. We recruit the Reviewer Pool from the Parkinson’s community, making sure we include as wide a range of voices as we can – people from different parts of the country, with different symptoms, of different ages, with different living arrangements and different experiences of technology. Although each review is written up by staff of Parkinson’s UK, the views it contains are those of the reviewers and not of Parkinson’s UK itself.
Editorial independence
There are two kinds of commercial relationship between Parkinson’s UK and the companies and individuals who create devices and apps. First, we might have funded research or development of the device or app in its early stages: this might have been funding academic research that later turned into a product, or might occasionally have been directly funding the development of the product itself. Second, the company might have funded Parkinson’s UK’s work: this might mean sponsoring one of our events, donating to the charity, or promoting our work.
Parkinson’s UK has set up a series of procedures to ensure that the Tech Guide operates independently and impartially.
Separate teams
The Tech Guide is run by a completely separate team within Parkinson’s UK. The Tech Guide team plays no part in any funding to or fundraising activity from any of the individuals or organisations that make the products we review. Our Steering Group is outside Parkinson’s UK and provides direction from the community, including deciding which products are chosen for review.
Evidence-based reviews
The product reviews we publish are based on detailed feedback from people living with Parkinson’s who have used the product over several weeks, and where possible also their families and carers. The reviews aren’t the view of Parkinson’s UK but of the reviewers themselves. This helps reduce the risk of bias or influence.
No involvement from suppliers
The company or individual who makes or supplies the products we review has no input into the review, and has no direct contact with the reviewers (although those reviewers may need to contact customer support like any other user for help, for example). We also do not accept any payment from the suppliers for reviews, but they may provide their products to Parkinson’s UK for review free of charge or Parkinson’s UK may purchase them. We decide which route to take on a case-by-case basis.
We do involve manufacturers and developers in the review process, because we want to encourage them to deliver the best products they can for people with Parkinson’s, and we want to make sure we can include all the facts about a product in the catalogue. However they don’t get any say in the review and, although we do share it with them before it’s published to correct factual errors (like the size or weight of a device), we don’t accept any other requests for changes.
Legal basis and guidance
Contracts
Whenever there is a commercial relationship between Parkinson’s UK and an external party (for example, when we fund research or accept sponsorship), we always have a contract in place. This specifies exactly what the other party gets from us and also, crucially, what they don’t get.
A sponsorship agreement, for example, will say which event is sponsored and how the sponsor will be able to take part. If the sponsor is a device manufacturer or an app developer, it will also clearly say that sponsorship shall not affect any product review the Tech Guide publishes and shall not mean we are more lenient or generous, nor that we will review a particular product sooner (or later).
Policies
Within Parkinson’s UK, we have a policy agreed at the highest level (our Executive Leadership Team and Board of Trustees) that sets out how we conduct commercial partnerships. These policies control how we communicate, what we can offer and what we cannot. They are the practical definition of our intentions, and make sure that everyone within Parkinson’s UK is on the same page and so that we can be consistent.