Sigrid Sollund: Researchers on a disputed study on ME and Lightning Process are met with a wave of FOI requests. The study has had a convoluted way to ethic approval, and is still not fully up and running. In the newspaper Khrono, several researchers talk about the increased workload these FOI requests create.
You are one of them, Silje Reme, professor of psychology at University of Oslo, you research ME and are one of the researchers behind the LP study, or lightning process, as it is called. What is it you are requested to share?
Silje Reme: First and foremost, I want to say that openness in research is extremely important. In the last few years we have seen a new direction in research towards more openness, more transparency. This contributes to better research. Higher quality research. Higher reproducibility in research. This I support 100%. But what we are talking about today is something different.
These are FOI requests where anyone can ask about any internal communication between us researchers. And it is difficult to see the benefit of this. But what is easy to see, is the consequences. This has a high cost, in the form of time used by us researchers and the apparatus around us researchers, and ultimately public funds. So the benefit/cost here is not proportional, and I don’t think the law could possibly have been intended for this.
Sigrid Sollund: How much time and energy is spent on this, since you describe it as so disruptive?
Silje Reme: There are FOI requests that are very broad, large, and requests to receive all types of internal communication in all types of channels. such as emails, text messages, Messenger, etc. There is also an expectation that this should be delivered in a short timeframe. This is of course demanding due to the time constraint put on us to compile the information and answer these requests. Resources, both from us researchers ourselves and the apparatus around us. It has an enormous cost, and in my opinion this is a terrible use of public funds that we would rather use on research.
Silje Sollund: Nina Steinkopf, you have ME, you are a public debater and write the blog MElivet, and are one of the many who have written FOI requests. Why do you believe it is necessary in this instance?
Nina Steinkopf: First I have to say that Silje Reme does not research ME, Silje Reme researches the lightning process. And that is part of the background here, because lightning process is an alternative treatment that British health authorities, among others, specifically warn against offering to ME patients. These FOI requests have unearthed a number of things worth criticizing in this project.
The study is rigged for a positive result. It is riddled with economic conflicts of interest, and in the application for ethical approval the researchers omitted to mention the very serious risk of side effects that this method entails. On the other hand, they have used an entire paragraph to smear and villainize the patient group. To a degree, I can understand why the researchers don’t want these things known, but when it comes to the workload of replying to the FOI requests I find it a bit strange, it is my experience with this, from when I have asked for information from the ethical committees, that it is the administration that has done the work of sending out documents. I have used the right to access public information in order to ask for access to public information. When it comes to…
Sigrid Sollund: We will just take some of this with Reme. It is a controversial study, it initially did not get approved, and when it did it was with dissent in the national ethics committee. Why should patients trust that everything is done properly?
Silje Reme: First I want to say that I’ve worked in this field both as a clinician and researcher for more than 10-15 years. And I’ve met many patients with ME who have been in a desperate situation and that want help. That was my motivation to go into this field of study, to contribute with my knowledge and contribute so that we can achieve better understanding and better treatment. When it comes to the controversial study and treatment, the backdrop is the many stories about dramatic recoveries, one of the patients was here in Dagsnytt 18 not that long ago and told her story. We can read about Emilie in the newspapers, she was bedridden and fed by tube, and rapidly had a dramatic recovery and is now on the national biathlon team. There are a lot of these stories. They make me, as a researcher, curious about «what is this?». If one as a researcher does not get curious about this, then one is not a good researcher. And that is the backdrop for this study we have put together.
Sigrid Sollund: We will take this on a more general note. Steinkopf, in your opinion how much time and resources should researchers spend on FOI requests instead of their research?
Nina Steinkopf: I have no particular opinion on that subject, but this debate about FOI requests is in my opinion simply clouding the real issue. In my opinion this study will have negative consequences for patients with ME for the foreseeable future. Especially as NAV (disability and welfare) will be recruiting participants, and we already know that patients with ME are especially vulnerable in the NAV system, where they are faced with particularly stringent requirements, and NAV demands treatment methods that can make patients more ill. And that is why we are extra vulnerable in this study.
Sigrid Sollund: We will add you to the discussion; we have two others who are ready to participate in the debate. Benedikte Moltumyr Høgberg, you are professor in the Institute for public law at University of Oslo and was chief of the Åpenhetsutvalg («Openness council») and have also been part of a regional ethics committee for many years. Can you understand that researchers find it taxing to get so many FOI requests?
Benedikte Høgberg: I can understand that it is tiresome to be met with FOI requests, and that it can be time-consuming.
Some of the challenges in this case is that this is a very polarized conflict where there has been a lot of pushback against the project from patients with ME, and when one then finds and reads the study protocol it is very difficult to get a grip on what this project is really about. It is very vague, they (patients) are given a three day course that will give them some sort of self-consciousness but we get very little information about this. And by the requirement of the Health Research Act one should be able to consider the soundness of the project. There was dissent in the national ethics committee when the study was accepted, and it is then a given that the public must be able to verify and understand what exactly it is the researchers want to research.
Silje Reme: Absolutely, I completely agree. And everything is publicly available in this study, the protocol, the manual, everything is available, and one can always be critical about study design and things can always be done better, but we have gotten approval from everywhere, and I don’t think any study in the history of Norway has been scrutinized as closely as this one. But what we are really discussing here is not FOI requests into public administration, that’s a matter of law, what we are discussing here are FOI requests into internal communication between researchers. Should information between me and you on email, text message or Messenger be freely available to anyone to ask for at any time? And this is also relevant for fields outside of ME, right, if someone doesn’t like a research project of yours, Benedicte, then that person can use FOI requests as a conscious strategy to delay your research. And I think the law could not possibly be intended for such circumstances.
Benedicte Høgberg: I can’t say I feel you are replying to the matter at hand. Because you say that the protocol is publicly available, but what I’m saying is that one does not get enough information about the research project from what is publicly available. That doesn’t necessarily mean that researchers have to provide private messages in this instance, but if that is what is needed for the public to understand what you are really researching, then that is the information that must be shared.
Sigrid Sollund: We will have someone else, who is actually the boss of two of us here in the studio, Svein Stølen. Headmaster at the University of Oslo. You have also appeared in Khrono and have been worried about all these FOI requests, and for the researchers, or for «free research». In your opinion, what information should universities provide in these cases?
Svein Stølen: Openness in research is absolutely crucial. We are supposed to show what hypotheses we have, the methods we use, what results we are getting, and that all this should be public is extremely important. But to the extent one is, shall we say, asking for access to communication between researchers in the same research group, even if they are located at different institutions such as between a phd candidate and supervisor, and so on, then I believe one is interfering in academic freedom. There should be discussion about the scientific results, when they are published, and part of the academic freedom is to ask the questions, use the methods and publish where one wants to. After that the open debate begins, and that is important. And as Silje is saying, when it comes to the administrative there should of course be access.
Sigrid Sollund: Høgberg.
Benedikte Høgberg: I agree with Stølen that there should be open debate after research results are presented, but there should be an open debate before this as well. There must be openness about what a research project is about. And in this case it is still an issue that the three day course that ME patients will be exposed to is not explained in the protocol.
Sigrid Sollund: But Steinkopf, why can’t you wait until the results are complete and ask for access then, and then criticize whatever might be revealed?
Nina Steinkopf: I think we ME patients deserve sound research. This method can be very harmful for patients with ME and I think we should be spared that type of treatment.
Sigrid Sollund: But if it really works for some, why not research it?
Nina Steinkopf: At the moment there are numbers that suggest that there are about 5000 Norwegians that have taken this course, and as far as I’ve been able to tell there are between 37-40 patients in Norway with an ME diagnosis that have improved. As I see it, those are not very good results.
Sigrid Sollund: Reme, there are, you talk about there being many positive stories, while others did not have a positive experience at all. Is it that odd that this project is met with lack of trust?
Silje Reme: There is no evidence that the lightning process does more harm than good. And user surveys can’t be compared with research, on the contrary the largest research study on lightning process, that is the most methodologically sound way to say anything about the effect, says that the effect is beneficial for children and young people as they report better functioning and less symptoms. So, so that is simply not true.
- I can’t pick up what Steinkopf is starting to say -
Sigrid Sollund: Ok, you disagree, I know. I just want to get back to Stølen a bit too because we heard Reme said she could be worried about other fields of research where there could also be polarization. What do you think about how these concerns should be weighted against each other and the need for openness and the fear of interfering in academic freedom?
Svein Stølen: Openness is important. And then we see, as indicated here, that some debates become more and more polarized, we see that in many fields. We see it when it comes to climate, gender, even the salmon tax, and there are more such topics where the debates become very polarized. So I think what is extremely important here is that we manage to keep these debates factual and about the subject, methods, uncertainty, and that we get this to move forward. There is this situation now where there are researchers who struggle to stay in their field of research; we see it in Norway and we see it internationally, so we must have a debate that is constructive. That is extremely important.
Sigrid Sollund: Høgberg are you worried?
Benedikte Høgberg: Yes I am worried about polarization, and here we see that research institutions such as University of Oslo and NTNU in Trondheim that are responsible for this, they have to enter the discussion and allay the patients’ concerns in these types of research projects. Not just the researchers.
Silje Reme: It is also important to separate patients and activists, because it’s not certain that the views presented here represent the breadth of patient experience, and that is very important to point out. That this is not representative for all patients. And I would like to pull the debate back to the FOI requests, because the benefit is not proportional to the cost. And this will potentially have consequences far beyond the field of ME if it can be used as a strategy to delay research one doesn’t like.
Sigrid Sollund: If you could answer that particular point Steinkopf. Is that part of the project? To stop the research from even getting started?
Nina Steinkopf: No. For my part, that has nothing to do with it. I am interested in research on ME being done using solid methodology, and being sound. I don’t think the project here does either. And I don’t think it’s the researchers that are the victims here.
Silje Reme: No. We only wish to do our job. We only want to do the research that we believe will benefit patients with ME and could be helpful. And we believe knowledge is the way forward. That is our wish, and then we need to get a clarification on the law on access so that we can do our job.
Benedikte Høgberg: And I also think it is important, to avoid the polarization between researchers and patients in this case, that one does not use words such as «activists». This is precisely what ME patients have reacted to previously, and also contribute to that one does not take the research project seriously.
Silje Reme: Yeah, but activist is a neutral concept. And the reason I use it deliberately is because activists are not necessarily patients. It could be carers, it could be friends, it could be acquaintances, it could be anyone. And they are not necessarily representative for the patient group at large. That I know well, both from my role as a clinician and researcher after close to 20 years.
Nina Steinkopf: But Silje Reme there are professionals in this lighting process project that have tried to stop biomedical research at Haukeland. Do you see them as activists?
Sigrid Sollund: You can reply to that, but we are now going over our scheduled time.
Silje Reme: That is not the discussion here today, we are discussing internal research communication and what you bring up there is about administration. That, in my opinion, is within the rights of the freedom of information act.
Sigrid Sollund: Ok, we’ll stop there, and thank you all for participating.
