By Sam Alexandra Rose
Our Patient and Public Involvement Manager Sam blogs monthly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch Syndrome. This month she looks specifically at how to get the best out of working with patients for medical product development.
Once uncommon, involving patients in academic medical research using established patient and public involvement (PPI) protocols is now routine and considered best practice. In fact, these days many funding applications require an outline of how you will involve patients in your research.
However, the same does not automatically apply with commercial or industry projects, such as the development of new medical products. It may be that the product development company isn’t sure where to start with PPI or for undisclosed reasons, there are other barriers to involving patients.
I would argue that the patient perspective is an invaluable contribution and a great investment for ensuring products, and indeed services, meet the needs of those who will be using them or benefiting from them.
With that in mind, here are nine common misconceptions project leads may have about PPI and why these may prevent a project from meeting its full potential.
1. Patients won’t know enough or won’t understand the subject
The attitudes of patients vary widely. Some may not want to know anything more than the bare minimum about their condition, but some will investigate it thoroughly, even seeking out academic papers on their condition or illness.
Therefore, it’s important not to generalise or have one picture of a patient in mind as everyone handles illness differently and this shouldn’t be a barrier to asking anyone to contribute.
Moreover, involving patients ensures that research can be communicated in ways that lay people are able to understand clearly. This helps with funding, media coverage and more. Having lay people on a new project means product developers can test the effectiveness and clarity of their explanations early and often.
2. Patients will be too scared to contribute
Again, all patients are different. Yes, some may not want to know much about their medical conditions or take part in research. But the people who voluntarily attend focus groups or respond to surveys feel differently. These people certainly exist and are keen to be involved with research because they want to help develop new treatments and cures. Our 1,000-strong patient network is proof positive of the appetite for patient involvement.
3. PPI is not relevant to us, or we don’t need to work with patients as we only work with surgeons
Even if the product developer normally works only with surgeons, doctors, or other medical professionals, patients still have a role to play. They may not be the people purchasing or working with the product, but if it’s being used for their care, they are involved. For example, firms developing a new endoscope, bowel preparation drink, or CT scanner, are working on products that the bowel disease patients will almost certainly use and many will be interested in how they may change their care or health outcomes.
4. Patients won’t make a difference to this project
Researchers, scientists and product developers are the experts in their fields, there is no doubt about that. However, patients bring a new perspective to the table. Sometimes it’s a case of “You don’t know what you don’t know” and asking patients about their experiences often sheds light on areas others may not have considered.
5. Will we lose power or control over our project?
Perhaps a reason for not involving patients is the fear of losing control over the project. Be reassured, the project will not be slowed down or distracted by asking patients for their opinions. Being open to new ideas could help to make the project even stronger and developers will still be at the helm making the decisions based on this additional data provided by patients.
6. PPI isn’t representative enough
Of course, any small focus group is never going to reflect the views of every single person in the population. However, professional bodies who co-ordinate PPI networks purposefully seek people from different backgrounds, taking into account age, sex, ethnicity, geographical spread, range of health conditions and life experiences. This provides developers with a good blend of points of view and helps them to develop new products that should appeal to more people.
7. PPI takes too much time and effort
PPI certainly does take a lot of time and effort to get right, but it’s worth it to ultimately develop a product or solution that is helpful and acceptable to both patients and clinicians. It would waste far more time and effort to develop a product without consulting users and ultimately create something that doesn’t fulfil people’s needs or solve the problem.
8. PPI threatens the scientific rigour of research
As mentioned, many funding applications now require an explanation of how PPI can be incorporated into the research. The reason is because funders genuinely believe that involving patients in research will strengthen it. Even when not applying for funding, it is a good idea to consider PPI if you want your research to be equally rigorous.
9. PPI is just a box ticking exercise
I hope I’ve made the point that including PPI in research for product development is far from a box ticking exercise but instead a means to understanding the worth of the patient, involving them whenever possible and suitable, and taking PPI seriously to ensure the product or service will help the people it intends to benefit.
If your firm or company is conducting a study or project related to bowel cancer or bowel disease and think your research would benefit from patient and public involvement, email sam@bowelresearchuk.org. You can also join our PaRT (People and Research Together) network as a researcher.