The patient as co-creator

It is clear to everyone that the patient is a necessity for public healthcare. Without patients, after all, there would be no need for healthcare. But how can the patient, in a positive way, become part of the innovation conducted by public healthcare, pharmaceutical companies and other innovation projects? Swelife’s portfolio owner for Expertise & Capital, Åsa Wallin, took part in two meeting days which addressed the issue in various ways.

One of the two days was dedicated to the theme of Patients and Innovation, organised by Swelife and the Swedish Disability Rights Federation. The main question addressed was: how do we increase the potential for patient involvement in the development of new products, treatments and services for better health? Patient representatives and people from the innovation system took part in the meeting.

From the patient side, there is a desire for a better understanding of the innovation process. If I am a patient with an idea, how do I proceed?

It can be a long road for a patient to push through a good idea, and there is a risk that it will fizzle out in the process. However, there are good examples of cases in which patient involvement has really made a difference, such as the Swedish Rheumatism Association’s work with easy-to-open packaging.

“As someone working in the innovation system, I see that if an innovation project is to be sustainable over time, it needs to be technically verified and have a good business model, but it must also make products for which there is a need ”, says Åsa Wallin.

Important Question

Some patient organisations are swamped with requests from different projects, while others are less in demand. Some innovation agents are used to gathering ideas from patients or developing them together with patients, whereas others do this more rarely. But everyone agrees that the question is important, not least to enable new products and services to be put to actual use in public healthcare.

“The client perspective within public healthcare is complex”, says Åsa. “The first client is the one who purchases the product. Then comes the client who uses the product, such as a nurse, and finally the end user, who is the patient.”

Not all change is innovation

The second meeting day in which Åsa Wallin took part was this year’s NIVO conference in Västerås. NIVO is the Swedish acronym for the National Forum for Innovation Supporters in Public Healthcare, and the meeting participants were mainly people working with innovation development in public healthcare.

Participants at the NIVO conference reflected on how not all change is innovation in public healthcare; a large part of it is in organisational development, where patient participation is so important. Patient participation in public healthcare can take different forms depending on the situation. If the patient is under anaesthetic, it is not possible to consult them, but in that case it is even more important to have a good dialogue once the patient comes round.

Patient Availability

Both meetings addressed the question of patient availability for innovation projects, and who really has the opportunity and the will to take part in development work.

“Patients are a very heterogeneous group”, continues Åsa. “How do you reach vulnerable, worried patients? They are hardly likely to want to take part in a focus group.”

One individual who is ill can never be a cross-section of all patients, which means that the patients who take part in a project have a lot of pressure on them.

“Patients as individuals are expected to represent ‘everyone’ with that particular disease, whereas a company is not expected to represent its entire sector.”

Opportunity for Co-Research is Attractive

Most innovation projects use representatives from patient organisations, which have varying opportunities to engage their members in development work. At the same time, the opportunity to co-research and create something together may attract new, younger members to patient organisations which may have a high average age.

It is not easy to find one’s role as a patient and to have the necessary knowledge to take part in innovation projects.

“You are not supposed to be doing this to get the healthcare you need, but for the opportunity to contribute your expertise.”

Some associations have training courses for patients who want to become co-researchers. The European patient toolbox EUPATI will soon be available in Swedish, and it is an important initiative to highlight the knowledge base.

Ethics is important

The issue of ethics and patient involvement was raised during both meeting days. If you are a physician conducting an innovation project, for example – is it OK to ask your patient to take part in the project? No, was the answer. It is better for the physician to ask the patient organisations about patients to involve in co-development.

You can see the various agents in patient-involved innovation as different roles that meet up. As an individual, you may have the role of a physician, but if you get ill and need to consult the healthcare system, you also have the role of patient. If, in addition, you are running an innovation project, you have the role of an entrepreneur, for example. Depending on your role, you have different skills and experiences. Healthcare staff have their expertise, patients have theirs and the entrepreneurs have a different set of skills again.

Respect for the expertise of the various roles is important. Patient involvement is thus not about making the patient into a physician, but about the healthcare system utilising the expertise of the patient in their role as a person in need of healthcare.

“It is also about transfer of power”, says Åsa. “Who decides whether I am ill or healthy? Patient involvement is not about questioning the physicians but rather about empowering the patient.”

Culture Clash

This entails the meeting of several cultures – and perhaps a clash.

“It is a lot to do with changing the culture. How do we express ourselves, what do we say, what happens if we bring these agents together? It is a shared journey we embark on together.”

Patient involvement is an issue which is topical at the moment, according to Åsa Wallin:

“If people are not yet working on it, they want to. I believe that certain systemic changes are required. But we are ahead of our time – it is an immature process. For example, we cannot require patient participation in our calls for applications as it can be difficult to achieve from a purely practical perspective. What is positive is that many companies are already taking that approach and see the business benefits of patient involvement. Now we need to work to ensure it happens early on in the process and that all agents are on board.”

Some success factors for patient involvement

  • The patient in the innovation project is to be part of a team. This means that the project does not stop if the patient enters a phase of active healthcare.
  • It is optimal to involve the patient early on in the process, preferably from the idea stage.
  • Equal opportunities. The patient’s participation is an expertise that is to be remunerated and therefore should not be on a voluntary basis. The patient is to be compensated exactly as other agents in an innovation project in a Swelife call for applications, for example.
  • See the patient as an important role in the description of requirements. The patient is a subject with something important to contribute and not an object destined to become one box to be ticked among various criteria.