Case from a Pharma Company (“Company”)
Update in January, 2018: This project has been discontinued due to internal matters.
The Initiative had the goal to understand the needs along the patient journey and to co-develop a solution that helps patients managing their daily life covering the most important needs. As early as possible, stakeholders’ needs alongside the patient journey were collected and matched, so that the most important needs could be identified. As a second step, based on the prioritized needs, a solution gets co-created and tested. The solution will get implemented after launch. The project itself got stopped due to prioritization of another digital health solution, which was more advanced. However, the insights could be used for the other patient solution.
The assessment of the quality of PE practice
Steps towards the Initiative’s solutions in a non-oncology disease setting:
1. Multi-stakeholder advisory board with patients, patient experts, nurses and physicians has been conducted by asking their challenges, needs and feelings alongside the patient journey (Please see details below).
2. Results from advisory board have been confirmed with market research and had been matched to internal strategy.
3. External landscape analysis has been conducted to check what solutions are available to patients with the disease.
4. Potential solutions with patients, patient group representatives, nurses and physicians, that were present in the first advisory board, have been co-created. Three ideas were defined to move forward.
5. The solutions have been tested with other patients and physicians and revised.
6. The solution is going to be implemented within test countries and in collaboration with local patient groups.
Overview of working sessions
Session: Working Session I (75 min. plus 15 min. walkthrough during coffee break)
Groups: 2 mixed groups (collaging is an individual task therefore group composition does not matter)
Exercise: Collage - select picture and create a collage that reflects how you experience life with the disease (For HCP: create a collage that reflects how you feel about treating patients)
Outcome: Emotional understanding of
- The patient’s feelings, problems, needs, state of mind
- The HCP’s feelings and emotions when treating patients
Session: Working Session II (60 min. plus 10 min. per group for sharing of key points in plenary)
Groups: Separate groups (Patients/PAGs and HCPs)
Exercise: Needs along the patient journey
-Talking through patient journey phases (awareness, diagnosis, treatment and adherence)
- Mapping of needs along the entire patient journey
Session: Working Session III (60 min.)
Groups: Patient/PAG group; HCP group
For Patient/PAG group: focus - life with the disease: impact on social life and living with the disease and symptoms
For HCP group: focus - interacting with patients: typical questions, concerns, dealing with patients’ emotions
Outcome: In-depth understanding of daily challenges, struggles and needs in focus areas that most relevant and actionable for Company (basis for solution development).
Session: Working Session IV (30 min. plus 10 min. per group for results sharing in plenary for III and IV)
Groups: Same groups continue from working session III
Exercise: Solution brainstorming for focus areas - information needs and other solution ideas
- Longlist of ideas that addresses identified needs in the focus areas
- Voting and definition of 3-5 ideas
1- Shared purpose
Company involved patients and patient representatives as well as other stakeholders from the start until the end of the project, by understanding the needs, co-creating the solution and by implementing it together.
Examples of the questions and topics planned for the advisory board to get discussions started.
1) Select pictures and create a collage that reflects how you experience life with MS or how you experience to treat MS patients:
Why did you use this picture?
Why is … important to you?
How do you deal with …?
What is the impact of … on your daily life?
2) Patient Journey:
What was it like for you to go through theses steps?
What were particular challenges you faced?
Why were certain things difficult and what are the implications of that?
What are things that went well?
What support did you receive?
a) What are your (an MS patient’s) biggest concerns when getting up in the morning?
b) Where do you feel the biggest challenges regarding your social life being an MS patient?
c) Where do you struggle most in daily life with the MS disease and the related symptoms? Contracts and track records are in place to meet Company’s compliance and legal requirements. After each of the meetings Company have assessed the quality of interaction with participants. The final solution still needs to be implemented and needs to include metrics to measure the success. [Edit Jan 2018: initiative has been disconnected]
2- Respect and accessibility
In the workshops a way of verbal and nonverbal communication was used with (for example) pictures, as feelings may be better expressed with images. Very strong listening skills as well as moderators who are having the empathy to accommodate all stakeholders have been used. There was a follow up in 1:1 meetings to clarify all individual perspectives and to understand if anything in the group was missing . HCPs and patients were first split in the workshop. However, the participants wanted to listen to the other perspective, so they handle a joined meeting the following time. Participants’ surveys helped to improve the project and the way of working with the stakeholders.
3- Representativeness of stakeholders
The most difficult task was the identification of the right participants*. They were identified via their affiliates and patient group relations people. Qualitative market research was used to complete their findings. *1) Patients a) just diagnosed and b) living with the disease for longer time from the 3 pilot countries 2) HCPs who were considered as local and/or global TAEs Company could match the outcomes of the advisory board and the market research very well.
4- Roles and responsibilities
Follow up meetings 1:1 as well as updates via emails informed about the progress. Once the final implementation is done, the feedback loop will be ensured. This PE project owners used feedback from participants to check if what they did was appropriate to achieve this criterion. The feedback of the workshop participants was always very good and didn't have a lot of feedback for improvement, other than mixing the stakeholder groups more.
5- Capacity and capability for engagement
In this project, the focus was on questions and solutions for daily life. Therefore, no further skills or knowledge from the participants were necessary. The stakeholders were informed alongside the process of the questions and tasks. Stakeholders did not look for clinical trial experience, knowledge of drug development. They selected participants on the basis of the following criteria: How long they were living with the disease Geographical scope Female and male ratio This PE project owners used participants surveys to check if what they did was appropriate to achieve this criterion.
6- Transparency in communication and documentation
Contracts and track records are in place to meet Company’s compliance and legal requirements. As per Company’s guidance, it is mandatory to document any activity with external engagement, e.g. advisory boards. There is a need to work on the share best practice in house and get local approvals for the engagement. Documents were shared with the workshop participants before, during and after the project. Before the meeting only the objective was shared. After the meetings the outcome and the next steps including the final testing were shared.
7- Continuity and sustainability
The scope of the project as well as the role of each individual involved was always very clearly communicated via the contracts, as well as in the meetings. Whenever questions occurred, they were appropriately addressed.
PE practice led to the following measured outcomes:
Profound understanding of patient and stakeholders needs alongside the patient journey. Potential solutions that may impact the life of the patients. This Initiative showed Company that there is a very high unmet need in giving the power to patient to live their lives. With the co-created solution, which is still in iterations, Company believes that it can help patients to achieve their goal to be proactive in living a normal life. The process Company has chosen, is a very solid approach, however, final implementation seems to be more challenging than anticipated due to cost and compliance considerations.
Positive impact for specific medicines development phases:
Improvement of self-empowerment and therefore also clinical care.
Direct or indirect positive impact for patients:
Living a normal life. Direct or indirect positive impact for stakeholders involved in the project (other than patients): Helping HCPs.
The project was stopped, however the way of working to assess the needs along the patient journey and how to co-create solutions already has been used by other disease areas. It was very difficult to find the right participants with the right profile and without compliance/legal restrictions. However, once Company had identified the stakeholders, the biggest learning was, that a multi-stakeholder approach gives the best overview to the questions Company had providing the variety of different perspectives. This made it easier for Company to prioritize the key findings. Involvement of the stakeholders alongside the project including the multi-stakeholder perspectives. It’s important to give enough time to plan and identify the participants.