Patients can create their own care plans

Supporting people to be involved in decisions about their care and treatment is vital and has proven to lead to better outcomes. This is often done within care planning and plans are often built upon professional-patient collaboration and shared decision making. 

Patients Know Best (PKB) is an advocate for patient empowerment which is why we have always offered our users the ability to edit or update existing plans added to their record to capture patient-reported outcomes and experience of clinical episodes.

A new update to Plans

Earlier this month, we released an update to the plans section of the platform so that if a patient does not have access to any care plan templates in their PKB record from their clinical department, we will provide a blank template for them to use by default. We hope this will further empower patients to create their own care plan to self-manage their health, and share with those involved in their care should they choose to. This also enables patients (or their informal carers) to add important clinical data which may fall outside the boundaries of their hospital or GP records.

Providing safe and effective care

A colleague of mine is a strong advocate for patients writing a care plan during every doctor’s appointment. He recently shared with me how he had to learn this the hard way after out-of-hours GPs and hospital A&E staff did not know what to do for his complex condition. They could not access his specialist’s notes, and the specialist had not written a care plan in the notes. Neither could my colleague remember what his specialist had told him should be the plan of care. This meant he had the wrong antibiotics for his infection for 2 weeks, and took up a lot of time for the doctors looking after him to track down the right treatment. However, the next time he was with his specialist he spent a few minutes – in the consultation – writing a care plan with his doctor of what actions he should be taking to improve his condition, and what to do when things worsen. This is safer for the next time he gets ill and also cheaper for the doctors and nurses looking after him out of hours.

Questions for your doctor

Next time you speak to your doctor, ask:

  1. “What illness do I have?” This should go in the first field of the care plan.
  2. “What do I need to do to get better?” Write the answer in the green section.
  3. “How do I know if I am getting worse? And, what do I do then?” This is for the amber section.
  4. “How do I know if it is an emergency? And, what do I do then?” This is for the final red section.

Creating my new plan

To create a new plan, the patient (or carer) can click ‘Add plan’ from the main Plans page found in the ‘Treatments’ section. The user will see which templates are available to them and can select a pre-formatted plan or an empty template. The user can then name the plan and click ‘Create’ to open the template.

The empty template itself has 4 optional fields and the option to add any relevant attachments. The first field is the main section of the plan for general information about your condition(s), and your health goals.

The remaining 3 fields are referred to as the ‘Traffic Light’ approach which can be used to describe three stages of the condition your plan refers to, and any actions to take on each stage.

To demonstrate, see the example of the traffic light system in an Asthma plan below:


A patient perspective

It’s always a privilege when patients take the time to feedback to us or comment on our upcoming or existing features. A patient who has been using PKB for some time (and in fact, was one of the first patients to request that patients add their own templates), had some really interesting thoughts on the use of plans and kindly agreed that we could share them below. 

Care settings 

“I think it is fair to say that people will increasingly receive treatments for chronic conditions from a wide array of providers; NHS and/ or Independent, as per the pre-COVID intentions to transfer some traditional hospital work into the community, introduce self-referral for certain disciplines (e.g. MSK) and even develop care practice in the home to alleviate budget and other constraints. COVID-19 and its related and aggravated financial burden will accelerate this. Patients more than ever will need to gather together the reports and results of different location encounters, procedures and interventions in one place.”

Third sector

“Many care settings, whether GP surgery or hospital specialist department, are far too busy to provide care plans to patients newly diagnosed with long-term conditions/ impairments. Condition-specific charities have for years delivered such a service, with well-designed care plan components carefully crafted by physicians and patients collaborating on the production and constant update of such plans. But, without the use of a good Patient Held Record (PHR), patient self-management plans will remain unseen, unknown and unused by other healthcare professionals treating the patient.”

For more information about our new updates and features, take a look at our recent Development blog. If you have any questions or need support using this feature, please get in touch

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