Remember the survey we posted on here, and included with the last Lifeline? In the PCR office, Naomi and Hannah have been analysing the results. Here’s what you said, and what we’re going to do about it.
PPI stands for Patient and Public Involvement. It means research that it done “with” or “by” patients rather than “to” or “about” them.
At PCR, we understand that research is what will make the difference to advanced prostate cancer. Excellent scientists and their knowledge and skills are essential if we are to turn our hopes into tomorrow’s reality. However, no one understands prostate cancer as well as the men who have it, their family and friends.
We want to get our scientists and people affected by prostate cancer talking to each other. We also think it is only right, as most of our supporters have been directly affected by the disease, that they have a say in what we spend our charity money on.
This survey was our first step towards understanding what kind of research our supporters want us to do, and how people would like to get involved with the charity. A total of 204 people answered.
Almost half (48.85%) of people who answered have or have recovered from non-advanced prostate cancer. The next largest group was friends or family members of men with prostate cancer.
Our supporters thought that finding and testing new prostate cancer treatments was the most important research for us to fund. Much of our research is already focused on this: Christine’s immunotherapy, Magali’s antibodies which could stop the spread of prostate cancer, and Aamir’s repurposed drugs.
Clinical trials were the second most important option. Funding a full clinical trial is beyond the resources of must charities, but we can support smaller, but valuable studies which are linked to clinical trials, and we have already been successful in getting new therapies close to being tested in humans.
A lot of people didn’t answer this question, and that’s fine. We also had people write comments saying they didn’t want to be involved. That’s fine, too. Getting involved in our decision-making is an option for people who want it, but we certainly don’t want anyone to feel they “have to” get involved.
It’s very important for us to say that you don’t need any special knowledge (medical or otherwise) to take part in Patient Voice activities. Your own experiences will massively help us to stay on track, which will in turn massively help people affected by prostate cancer. We will “translate” any of the complicated terminology, and help you understand everything you need to, and we will also find ways for people to be involved if they are concerned about travelling, for example.
Most people preferred to help us decide which research projects to fund by reading and voting on short descriptions of the projects, written in simple, everyday language. These are called “lay abstracts” and are a common way for patients and their supporters to be involved in making decisions about funding research.
Most of you said that a printed information booklet, telephone helplines, and peer-support groups are important supports for people with prostate cancer.
Our printed booklet is reviewed by clinicians, and we have done our best to make it both as comprehensive and easy to read as possible. It also has a list of questions to ask your doctor, and space for you to make notes. It’s available from many hospitals, or you can email [email protected] and one will be posted out to you, free of charge.
As a research organization, we don’t provide telephone support, but you can access these supports with Macmillan and/or Prostate Cancer UK. Tackle Prostate provide peer-support groups. We also have a list of places to get support for prostate cancer here, on this website.
“I found the printed booklet very useful in understanding prostate cancer. I had prostate cancer and had surgery and radiotherapy and feel very well
Former prostate cancer patient
Anonymous
You said that you wanted updates on prostate cancer research, and factual information on prostate cancer, and we’re listening. Since we started analysing this questionnaire, we’ve put some time aside to monitor prostate cancer research news, and share relevant stories on social media (we will also continue to have a science news spread in the newsletter).
Many of you left comments stating you were concerned or confused about PSA results. PSA testing is controversial, so it can be hard to get the facts. We put together our PSA blog post in response to these comments.
We know that information about how we run the charity is not as interesting to most people, but we will continue to share this information for those who do want it – it’s important for us to be transparent and accountable to our supporters.
The newsletter was the most popular way for people to receive information, although we are aware that as most of our answers came in by post from the newsletter, the results might have been skewed slightly. Email was the next popular option, and although we don’t currently offer email updates, we’re planning to roll them out this year, probably as an “in-between” to Lifeline, which comes out twice a year. Update your contact preferences here if you would like to hear from us by email.
Sharing information about prostate cancer, and about what we do, is important to us. But as a small charity, we will always focus the majority of our funding on research.
Most of our supporters have been directly affected by prostate cancer in some way. This is something we are always mindful of, and why we are so committed to funding the best research we possibly can.
There are many ways you can make a difference to our scientific research.
We’re very happy to have reached so many people who fit the profile of men affected by prostate cancer. However, prostate cancer is a disease which affects the entire family, and for that reason, we want to hear from other people too.
In particular, men from an Afro-Caribbean background are more likely to get prostate cancer, and given the diversity of the UK, we’re concerned that the response to our survey was overwhelmingly from White British men. We’re actively working to make sure the next stage of our research reaches a wider range of people.
While it was disheartening to realize that we had reached so few people from ethnic minorities, at least we know now, and can do something about it.
We will soon begin talking to patients and their family members, on the phone, in person, and in small groups (focus groups). By sharing their experiences and views, the people who take part in these activities will make a big difference to prostate cancer patients and their families, and help shape what we do as a charity. No special knowledge, medical or otherwise, is needed, and we will cover travel expenses to central London, or, if enough people sign up from a particular area, we will travel there.
We plan to talk to people on the phone from the 25th of March to the 5th of April 2019. We have slots available to speak to us, or take part in a group, on Tuesday 26th and Wednesday 27th March (morning, afternoon, and evening slots available), or Saturday 6th April (morning and afternoon). Focus groups will run for one to two hours and interviews will take 30 to 45 minutes.
To sign up for future Patient Voice, email [email protected] with your preference for telephone interview, to talk to us one-to-one or in a small group, your location, and on which of the above slots you are available. People who signed up after they finished the survey will be contacted in the next few days.