Patients are often very keen to participate. This is true for their own health, but also for the transformation of health care in general. I was amazed at the value, energy and momentum that patients brought to a Personal Health Record project that we carried out just recently. Of course, a Personal Health Record is supposed to be “owned” by the person and is meant to support that person in taking care of his or her health. So even though engaging patients seemed very natural, it was not immediately apparent how to go about it.

Under the leadership of patients federation NPCF, together with doctors federation KNMG and health insurance association ZN, a joint project team of NPCF and Capgemini Consulting really put the patient in the driver seat. All parties are convinced that patient engagement is crucial for the success of a Personal Health Record, to successfully achieve the aspired transformation. The patient narrative provides the drive for change. I will include the links to the Dutch language videos and publications.


Starting from a literature review of Personal Health Record (PHR) initiatives, patients were invited to join in discussions about the PHR and their experience (if any) and their expectations. This led to a number of stories about the personal frustrations with the current health care system and how a PHR would help overcome the major difficulties. These stories were captured on video and provided an excellent starting point to answer the “Why?” question of the PHR project. Later on, the patient stories were bundled together in a booklet, as a reminder for all involved in any of the project’s activities, and as a public statement on the ambitions of the patient federation with the PHR.


Next, we looked for PHR Ambassadors, people who already had experience in using a PHR. We found two through our personal networks: Wilma, a happy hotel employee from the storytelling group, and Henk, a colleague at Capgemini Consulting. Again we used video to capture their stories, how they used the PHR in their lives. This provided a clear answer to the “What?” question, as well as an indication of the value of the PHR to them personally. Unfortunately Henk is no longer with us, he didn’t survive his illness, but we carry his torch for the PHR.

Patient Surveys

When starting on the topic of PHR, a survey was carried out to test the interest of the population at large. This supported the stories on the need for a PHR and the expectations people had of such a tool. Later on, another survey was launched among a broad panel of patients, to look into the actual use of PHRs, the more specific expectations and the triggers to use a PHR (or not). This supported the stories of our Ambassadors and the more detailed requirements that we distilled from a number of pilot studies. It is hard to deny the voice of over 11.000 respondents on a topic that involves them personally.

Patients first

All presentations in the project started with a video of either the patients or the PHR ambassadors. Whenever possible, we invited patients to take the stage, ask questions or provide us with their perspective. At last week’s conference, for instance, when the project’s recommendations were to be presented to the Minister of Health, our PHR ambassador Wilma agreed to do this. “Ah, there it is! Thank you Wilma, I got it” the Minister replied on video. And that sums up what we all felt: “Thank you Wilma!” for making the PHR project so much better, and for lending your voice to put patients first.

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