Key themes and illustrative quotes
| Themes | Findings | Illustrative quotes |
|---|---|---|
| Beliefs about PPI in medicines R&D | Views varied widely Positive and some ideas about how to implement Positive and little idea about how to implement Negative—believe that there is little role for the public in medicines R&D | “But you could also bring a couple of patients into that (physician advisory board) who could say, well that's all well and good from a physician's perspective, but actually the way that would be as an experience for the patient, I'd recommend you did this”. Interviewee 2 “They could influence the manner of conducting studies as well as planning the studies” Interviewee 5 “In general, such role would be slight; because the place where patients can play a role are the studies, so maybe some sort of cooperation regarding the studies, patients’ associations might be involved in it”. Interviewee 15 |
| Challenges and facilitators to patient involvement—Patient related issues | ||
| Patient and public knowledge and awareness of medicines R&D | Beliefs about patients and the public's information needs Believe a detailed level of knowledge is needed Believe that a detailed knowledge is medicines R&D is not required | “There are lots of things that they understand but they don't always appreciate, I think the constraints in which we work. For example, when we have commitments for data we need to bring them in a certain timeframe, because we also have for internal rules and budgeting rules”. Interviewee 5 “If it's to inform the study and the design then you probably need a fairly detailed level of knowledge about how the disease works, how you might interpret it and practical side of things. So I would have thought that its fairly feasible but it does take the right individual and you have to clarify what you are looking for from them”. Interviewee 2 “I think that the public should know as much as it is interested in knowing. The patients don't really need to know about the process of developing a medication. In this knowledge, the most important aspect is the final document which evaluates the benefits and the risks for the patients and the manner in which we arrive at these benefits and risks”. Interviewee 18 |
| Interest in, and engagement with, medicines R&D | Believe that patients knowledge and interest in medicines R&D varies depending on their individual characteristics, and that in many quarters that knowledge and awareness is growing Some felt that patients and the public don't think about medicines R&D until they need to Even if high-quality information is available many people won't attend to it One explanation for lack of engagement might be negative public perceptions of industry which many interviewees felt were shaped by what they felt was an ill-informed mass media | “I think that everything depends on the group of patients. Definitely, there's greater awareness among young patients. Especially with respect to chronic diseases, which do not have treatment that would be 100% effective? Currently, our company is also dealing with rare diseases where the parents’ awareness is much greater. Young people have contact with the world; they have access to the Internet, they use it and they search for information”. Interviewee 17 “That is very difficult to say. I do not know if our society, in general, feels a need to have that information, they do not really care”. Interviewee 10 “It seems to me that the society is completely deprived of immunity to negative sensational stories of this type. This may partly be the result of limited knowledge”. Interviewee 2 |
| Pharmaceutical industry-related issues | ||
| Understanding of patient involvement | Interviewees felt that the aims, functions and values of patient involvement were poorly understood within the pharmaceutical industry | “And I'm certainly an advocate for them being more involved at the regulator side, but also why not work more closely with industry so industry knows before the regulators tell them the patient perspective on whether they come to market is X, and we've got a closer voice for that”.Interviewee 2 |
| Operationalising patient involvement | Challenge of working with different-sized patient organisations with different agendas Challenges of conflicting agendas and agenda-focused contribution of patients Beliefs about how and when patients should become involved | “If you go to industry, you got to industry, and they're either a big company or they're a small company, but when you go to the charities they all have different aims and objectives, they all have different requirements and different specialisms, they all have different levels of understanding of what's going on”. Interviewee 4 “It's nearly a conflict of interest, really with patient based organisations, that's what they want is to have some control and to be able to drive research in the direction they think it's most important and should be going. I think it's especially difficult in the post-marketing space where as industry we have to generate evidence for EMA or payers. The patient organisations need to understand these commitments so that they can integrate these commitments into their plans. I think sometimes that what is not always well understood is the environment in which pharmaceutical industries have to operate”. Interviewee 5 “It requires from the patients to be able to take a perspective that is not necessarily his own perspective but more being a representative of a group of patients affected by the same disease”. Interviewee 5 “I personally think that if we're able to make drug companies a little less mean and leave and were able to spend some time so that there was that kind of explanation given to the patient that would be great.” Interviewee 6 |
| Relationship between the pharmaceutical industry and patient organisations | ||
| Beliefs about current relationship with patient organisations | Belief that their current contact with patients was relatively industry led—sponsorship or asking for specific information from patients Beliefs about the changing relationship between patients and industry | “I'd say it was still a journey because some of the patient groups. The old model was industry gave them money and the bigger the company the more money you got and it didn't really matter what it was for. And now we are looking specifically at funding projects.” Interviewee 4 “We work with patient associations and the last one that I did started in 2001, and it's amazing how things have changed in the last 12 years, in that the work that we were able to do together with the patient association then, would be completely not allowed with today's world. It was a much more intimate involvement in what we were doing and now whenever we discuss what we're doing; it's considered that we might be enticing them to take a drug and all this kind of study.”Interviewee 6 |
| Influences on current relationship | Belief that patients and the public's negative perceptions of the pharmaceutical industry are strongly shaped by negative reporting of the pharmaceutical industry Little available medicines R&D information and that which is in negative and from the media Financial drivers | “So you hear negative perceptions and stories about trying to get drugs sold in various countries. The big fine, X has had in the country, so you hear about that and then you hear that drugs are high priced and Bad Pharma, but you don't really hear good news and drug development in its simplest form where you produce something is not really praised in the same way.” Interviewee 3 “In reality, the journalists are not really interested in the problem as such; they are only searching for a sensation”. Interviewee 17 “Doctors know that it's safe and a patient may resign at any moment. It's not like you sign a document and you have to participate in it until the end. But everything boils down to education. The knowledge is based on myths and stereotypes and it is very limited.” Interviewee 14 “I've been working with the patient groups, the ones that I currently have a relationship with and with new ones that approach us and they sort of say, well, that's really unusual because normally pharma just kind of gives us money. And I say I can't give you guidance as to whether or not it'll be accepted; it all depends on is it compliant and is it appropriate, as deemed by our independent committee. It's been interesting, because some of the patient groups have sort of said, but, that sounds awfully complicated, and others, the larger ones, say actually, that makes perfect sense.” Interviewee 4 |
R&D, research and development.