Information may be difficult to find, but the topic of user involvement in research is one that engages. On 17th September, more than 150 people met in Media City Bergen, to learn more and to discuss the the usefulness of user involvement. Patients, nongovernmental organizations, pharma industry and leading Norwegian and international researchers shared their experiences with the aim of making the world of research work better with involvement.
Simon Denegri is the National Director for Patients, Carers and the Public, National Institute for Health Research (NIHR) UK. He explains to the audience that the vision should be a population that is actively involved.
– We need a change from looking at people as guinea pigs, to see people as partners. We must look at a greater diversity and a larger inclusion, explains Denegri.
Simon Dengri has shown strong interest in being an Ambassador and mentor for Norway’s continued journey to improved patient user involvement. He is currently in discussions with Bergen based Charalampos (Haris) Tzoulis and the team (FKB center applicants, Research Centre of clinical treatment within brain health), about a position in the advisory group, if the application is successful. By the end of November 2018, the decision from the Norwegian Research Council will be made.
What do you think about Norway’s position of Public Involvement in Clinical Research?
– Everyone needs to start somewhere, starts Simon Denegri.
– In my experience, all countries have powerful, passionate advocates. But, these people lack a place where they can talk to researchers. They need to hear leaders of institutions and universities tell them that they are here.
What are the most important things patients can contribute within research?
– Real life experience, of what it is to be a person with a condition or a disease, and how they live their life in their community.
What happens if you don’t include public involvement in research?
– Design your research around the patients. There is a danger that the research is not relevant for them if not. And this research is not worth doing. Too much research done today is without public involvement.
Denegri has a positive outlook on the future.
– It is events like this today, which makes me more positive about the future. It is passionate people like the ones we have seen today that makes a change.
– There has been powerful stories this afternoon. I could sense the power in the room, ends Denegri.
There are many hurdles to overcome when encountering clinical studies. What are the barriers to patients, relatives and industry who want clinical studies in our public healthcare system? How can we help develop innovative solutions so that more patients are offered to participate in clinical studies? Maybe MED.hjelper is key to solving some of these issues.
What is a MED.hjelper?
A MED.hjelper is anyone who knows enough about clinical studies, to help a friend or relative to be aware of the treatment opportunity it represents, and to be able to ask their doctor about it. This ambassador programme will be supported by a user-friendly search engine, toolkit on a website, and patient’s stories on a web portal. The team is looking for partners to ensure the prototype and concept to go live, and to make real impact in people’s lives.
MED.hjelper presented their case, a project that will spread knowledge about experimental treatment, and user participation in clinicale research. The case study was delivered by Bergen Teknologioverføring (BTO) to Norway’s only Design Thinking-program. For almost a year the team have worked with how they could redesign the patient, relative and the industries pathway with the health care system through clinical studies. BTO administers industry-initiated clinical studies for Helse Bergen, and has experience with the need of improvement when it comes to user involvement and information to patients.
One of the people who were impressed by MED.hjelper’s presentation was Jonas Einarsson, CEO of Radforsk.
– MED.hjelper is one of the best ideas I’ve heard of in a long time here in Norway.
Katrine Bryne Senior Adviser in Legemiddelindustrien (LMI) only had good things to say about MED.hjelper.
– We have participated in the resource group of MED.hjelper with great pleasure, said Bryne it was her time to present.
These “advocates” held presentations at the seminar:
- Marthe Hammer, Leder fagsenter for Innovasjon, Forsknings- og utviklingsavdelingen, Haukeland universitetssjukehus
- Charalampos (Haris) Tzoulis, Forsker & Nevrolog, Haukeland universitetssjukehus
- Simon Denegri, National Director for Patients, Carers and the Public, National Institute for Health Research (NIHR) UK
- Design thinkers / MED.hjelper: Anne Karine A. Monsen (Bergen Kommune), Ane Grønsberg (Kavli), Anette Mørch (DNB Markets), Christine Hagen (Tryg), Eirill Wiik (Uniform) og Tone Skår (BTO)
- Gina Barstad, rådgiver, Kreftforeningen
- Lise Stousland, nestleder, Stiftelsen ALS Norsk Støttegruppe
- Jónas Einarsson, administrerende direktør, Radforsk
- Katrine Bryne, Seniorrådgiver, Legemiddelindustrien (LMI)
- Bjørn Klem, General Manager, Oslo Cancer Cluster Incubator
Entrepreneurs and companies:
- Erlend Hausken, Soundio
- Peter Skaugvold-Olsen, Adiona
- Åsta Lindemann, Haltenbanken – Helse Fonna, ViMo
- Roald Kvam, Motitech
Video from the seminar
What are clinical studies?
Clinical studies are about documenting effect, safety and tolerance of new treatment methods. For example, a new or re-purposed drug may be used during clinical trials. An additional benefit of clinical studies is the improvement of the countries health care system, due to increased staff training, and exposure of new treatments and new techniques. Most importantly from a patient perspective; patients gain access to new treatment, years before it is available in standard treatment.
Legemiddelindustrien (LMI) wrote an article about the seminar. You can read it here (in norwegian).