Background
Methods
Design
Setting
The development and features of the CMyLife platform were described in detail elsewhere [24]. CMyLife facilitates CML patients with a website (www.cmylife.nl), a medication app, a guideline app, and a personal health environment (PHE). The CMyLife platform and its components are depicted below (Fig. 1). |
The website provides accurate and easy to understand information about CML, medication, guidelines, side effects, and the effect on daily life (work, sports, mortgage etc.). Through the website patients are enabled to communicate with specialists and other patients. |
The medication app [35] is used to set medication alarms, register their medication intake, request for repeat medication prescriptions and read the information leaflet of medication. In addition, patients can log the side effects they experience, which can be shared with their HCPs through their PHE. |
The guideline app [33] enables self-monitoring of the biomarker BCR-ABL1, by sending monitoring reminders according to the Dutch CML guideline, and shows an understandable explanation of patients’ BCR-ABL1 values in relation to the Dutch guideline. |
Patients can save their own medical records from their electronic medical record in their personal health environment, consisting of a Patient Knows Best portal [36]. For example, they can share their side effects with their HCP in order to discuss them. |
Study participants
Focus group interviews | N | Individual interviews | N |
---|---|---|---|
Project group | 7 | Employees of pharmaceutical companies | 2 |
Patients | 6 | Employees of the Netherlands comprehensive cancer organisation | 2 |
Haematologists | 16 | IT-specialists | 3 |
Specialized nurses | 4 | Health insurers | 2 |
Molecular biologists | 10 | Policy makers | 2 |
Privacy officers | 2 | ||
Pharmacists | 5 |
Data collection
Data analysis
Creation of implementation guide
Results
Interview characteristics
Barriers to and facilitators for implementation of CMyLife
Innovation: CMyLife
Barriers
“You should think about who is eventually owner of CMyLife and who takes care of updates and who keeps the platform going.“ (IT-specialist)
“Receiving a reminder for registering side effects only once a week would be better. Like, take a look back at your week which side effects did you suffer from, I would actually do that.” (Patient)
Facilitators
“The biomarkers were good and the app shows that the patient took his medication well, yes, who are we to say that they should also physically see that patient, that is not necessary at all.” (Health insurer)
Patient
Barriers
“I think that contact with my healthcare professional is important, so I just visit four times a year.” (Patient)
Facilitators
“I think it is possible to make sure that patients have their blood drawn at home, or somewhere near their house, and patients could only come for a consultation when their medication or biomarkers factor are not ok. This way both travel time and office hours can be saved. I think win-win-win.” (Health insurer)
Individual professional
Barriers
“How interesting is your work if there is no more personal contact. It is not only important to hear about side effects but also the story around it.” (Haematologist)
“Since work pressure is high and changes like this take time it is hard to get everyone cooperative with implementation.” (Haematologist)
Facilitators
“Make the advantages that CMyLife has very prominent for everyone, then it seems almost impossible not to support it as a centre.” (IT-specialist)
“Keep informing people what you are doing and keep them engaged, motivation and information is essential.” (Specialized nurse)
Organisational context
Barriers
“I think the biggest problem is IT.” (Specialized nurse)
Facilitators
“You have to create a project group with the important parties in your hospital and they should lead implementation.” (Project group)
Social context
Barriers
“What I'm concerned about is that if you're going to centralize the care, some people have to let go of something and they don’t want to.” (Employee IKNL)
Facilitators
“I think that raising awareness and taking our colleagues along will be the first challenge to make it land properly with other hospitals.” (Project group)
“Seeing good examples up close, that can motivate, to exchange and discuss this with each other, to really go a little deeper, to stimulate each other.” (Policymaker)
Economic and political context
Barriers
“It would be a shame if continuity is at stake because gaps in financing arise, sponsors might disappear at some time, then it will become very unstable, you should not want that, it would be nice if it became wider supported, also by health insurers that have an interest in it, but perhaps also clinics that can step in, but then there must also be financial benefits in return.” (Pharmaceutical company)
“Before we can implement at all, I think everything around privacy and security must be arranged properly.” (IT-specialist)
Facilitators
“The moment we see initiatives that improve patient care and it has a positive effect on costs, we are interested to play a role.’’ (Health insurer)
“For health insurers it is very important that there is a business case behind your innovation, that is crucial for these kinds of conversations.” (Health insurer)
Implementation guide
Phase of implementation | Strategy |
---|---|
Development innovation | |
Formulate clear goal, vision, focus, and strategy | Innovation optimizing strategy |
Establish a clear organisational and governance structure | |
Create a clear overview of IT-system architecture | |
Make data infrastructure and data flow transparent | |
Ensure that the innovation complies with regulations regarding data security and privacy | |
Set a clear business case | |
Set a change plan and/or continuously adjust innovation based on change plan | |
Give platform/apps appropriate name(s) | |
Involve key stakeholders from the start during development of the innovation | Product focussed strategy |
Work intensively with end users on content, design, further development/improvement of the innovation | Innovation optimizing and product focussed strategy |
Work on (further) development via short cyclical improvement, e.g. the so-called plan do check act cycle | |
In the (further) development of the innovation, take diversity of patients into account | |
Get the technical aspects in order and set up structure for solving bugs | |
Minimize the number of different IT parties involved | Innovation optimizing strategy |
Make concrete agreements with IT party(ies) about responsibility for updates and security | Cooperation promoting strategy |
Involve IT/privacy officer continuously in the design, further development and improvement of the innovation | |
Explore (cost-)effectiveness of the DCP | |
Dissemination | |
Communicate vision, focus, strategy, organisational & governance structure, system architecture, data infrastructure & data flow | Informative strategy |
Communicate agreements with IT party(ies) about responsibility for updates and security with relevant stakeholders | |
Promote innovation through patient conferences | |
Find and use additional distribution channels that are already working well | |
Communicate (cost-)effectiveness | |
Continuous motivation and support of end users | |
Evaluate user experiences of the innovation and provide insight into effectiveness, ensuring that stakeholders/users will see the added value of the platform | Motivation and support increasing strategy |
Engage key figures and opinion leaders to provide motivation & support for innovation among stakeholders/users to increase | |
Have project team members (or rather the key figures) go to hospitals for personal approach & highlighting the benefits of DCPs | |
Organise meetings with patients & healthcare providers (focus groups, workshops, conferences) for support | |
To motivate caregivers for change (to see the need) | |
Make the content of the innovation attractive to end users. For example, use an up-to-date website so that the usefulness of the DCP becomes clear | |
Hospital-specific context | |
In terms of IT, make sure that the 'unwieldy hospital equipment' is circumvented as much as possible so the DCP does not/barely needs to link with hospital systems | Organisational strategy |
Ideally, there is a connection between electronic patient files and the innovation (when relevant) | |
Inform and motivate hospital organisations about the importance of the innovation for patients; provide a fixed point of contact in the hospital who feels responsible for a smooth implementation | Informative and motivation and support increasing strategy |
Emphasize that good IT facilities for implementation of the innovation are a must have for hospitals | |
Actual implementation and long-term and enduring financing DCP | |
Prepare and set a good blueprint/guideline for the rollout of the innovation, including the involvement of stakeholders; among other things, deal with the IT connectivity of systems, privacy & security, step-by-step plan with what needs to be arranged in a hospital before implementation and in what order, and where to go for support | Facilitating strategy |
Start implementation on a small scale | |
As a project team, offer temporary support for implementation; for the long term a good business model is indispensable | |
Provide training for caregivers, if necessary (do not focus on the ultimate user-friendly tool because this is different for everybody) work with smart PDF including instructions | Educational strategy |
When implementing with patients, provide extra support for certain groups | Motivation and support increasing strategy |
Ensure the use of patient-reported outcome measurements data during a consultation, when patient-reported outcome measurements management is part of the DCP | |
Integrate the DCP into the clinical pathway as much as possible | |
Ensure assurance in 3 steps: start with the idea, continue to exploit innovation, build a good business case (with real-world evidence!) and obtain financing for long-term and enduring financing | Market-oriented strategy |