Cancer Mum: So what do Patients and Citizens want from accessible Health Records?

I was recently invited to participate in the procurement phase of a Local Health and Care Record (LHCR). I was one of a handful of citizens who had expressed an interest in finding out what was going in our local area as there had been no citizen engagement. My interest was centred around patient access and the functionality offered to citizens to contribute our patient held data. I was surprised by the wide variation in the suppliers solutions and it seemed to me that some had missed the point. In a Skype web call to moderate the supplier scores I suddenly realised that there was a gulf of misunderstanding about how the public might want to manage their health data. The suppliers and NHS professionals had clear ideas on what they considered a good patient centric model. However as a Carer for a person with complex long term health conditions and as an ordinary health-conscious citizen, their ideas did not match mine or come close. The professionals were impressed by data collection from wearables and pre-consultation information forms but what do the public really want from their LHCR?

The realities surrounding personal health data need to be explored and the way the public want to access and use their data needs to be understood by all those designing software solutions and commissioning new LHCR solutions. My experience in creating and managing my family’s longitudinal medical records has given me an insight into the needs and expectations of public users. So here are my thoughts.

We need to start by asking some basic questions.

1.What personal health data do people have?

In a simple scenario as an older, fit citizen I have a range of health data which I would like to contribute to my area in a LHCR. The healthcare landscape is changing and data can come from other sources from outside the NHS. So what have I got?

• Tesco annual health check results consisting of blood pressure readings, Cholesterol (Total, HDL, Ratio) and a fasting blood glucose test.
• Specsavers hearing test result and audiograms suggesting ENT referral
• Medichecks annual Thyroid Function Tests for monitoring T3/T4 combination therapy
• Reports from independent providers for Physiotherapy and Dermatology treatments following self referral
• Optical Records
• Dental Records
• Patient created electronic longitudinal primary care health record created from paper records to restore failed electronic GP record transfer and lost paper notes

In more complex long term conditions there can be more data and I have described the complexity and process failures of my son’s situation in my previous blog. https://cancermumblog.wordpress.com/

The medical records for my son consist of

• Data from treatment in Europe including surgical procedures, radiotherapy planning and treatment data which is absent from NHS records and different from U.K. practice
• Five years of information from follow-up cancer consultations in Europe through reciprocal EU health arrangements not recorded in NHS records
• Data from independent stroke rehabilitation providers
• Power of Attorney, organ donation and other directives
• A fully comprehensive electronic longitudinal record created by our family to combine 20 separate medical records across the UK and Europe into one unique chronological resource not available in the NHS

2. Why do we have this data?

For many people the landscape of healthcare is changing. Local restrictions by Clinical Commissioning Groups mean that some services are restricted or not available such as Thyroid profiles including T3, Vitamin D testing and others. Pressure on GP services have resulted in high street retailers taking the opportunity to expand into healthcare. Easy self referral to hearing tests, commercial blood testing, DNA evaluations and more come with fast results with independent medical practitioner reports.

In more complex medical conditions the internet has provided information on medical treatments in other countries. The story of Asha King and his family is well known. What is not so well known, is that many people over the last fifteen years have also taken advantage of improved treatment outcomes and cancer survival rates, in Europe and further afield. In 2005 our family moved to France for four months to access Proton Therapy, an advanced form of radiotherapy, not available in the UK at that time. During our four month stay we met a succession of British patients who had chosen to fund their own treatment for the improved chance of survival. All these patients will have their own medical information not held with NHS records.

3. Where is it stored?

Our data is currently stored in our Documents and Letters file which is provided in the Evergreen Life App. Each piece of data is entered into the file using the photo capture function within the App. Each new document is indexed by type, date and source/author. This indexing enables a search facility by choosing any one of the indexing categories. So for example with consistent indexing all skull base MDT letters can be searched for and subsequently displayed. There is the ability to link the data entry to a condition or medication. The privacy level can be set to normal, personal, GP record or an only me setting. There is no limit to the amount of data stored. This has enabled us to create our own comprehensive longitudinal health records. The simple share facility allows us to share our account with trusted members of our family and clinicians if we wish. The email facility can be used to forward a single data entry to share information with another party. The App is available on any device and allows quick retrieval of specific information in a medical crisis, in clinic consultations or wherever we need to share historical clinical information.

4. How do we incorporate this data in Local Health Care and Care Records?

The range of medical data held by people/citizens/patients/carers is increasing. So how are we storing, accessing and using it with current technology? For our family the facility offered by the Evergreen Life App has set a benchmark. The minimum functionality for entering patient held data in our LHCR should include what is currently available:

• Personal document files
• Free text entry
• Indexing
• Photo-capture
• Linking to condition/medication
• Search facility
• Share facility

The facility to capture data from wearables is important. The use of technology to self manage health conditions like Diabetes is increasing and work is being done to create disease-specific platforms. However there must be the capability to add a variety of patient held data. The ambition of patients to add their own information must be considered in the design and choice of current solutions.

5. What other features would benefit the patient/public user?

Managing a complex health condition with care from multiple providers and specialties is a time consuming and frustrating job. Along with straightforward access through the NHS App some simple solutions that would benefit patients and carers are:

A Timeline. A simple linear representation showing the onset of health problems with dates of diagnosis, surgical events and drug therapy would provide a succinct accurate description of the patients health journey. Explaining a complex long term health history to new clinicians is both difficult and frustrating for people wasting valuable consultation time.

A Calendar. Patients and Carers who have interaction with multiple health providers are often overwhelmed by the large numbers of appointments. A calendar which imports all appointments onto the calendar page would avoid clashes from multiple providers and provide an easy reference point to see all future appointments. A reminder facility would reduce the chance of missed appointments.

Messaging Platforms. Simple messaging to health providers would change patient, Carer’s and service providers experience. Today I have tried to manage two appointments without success because I can’t reach the people concerned. The usual routine of a specialist nurse visit, with blood profiles, is usually followed a few weeks later by a Consultant visit. Staff holidays have reversed the appointments. With no recent monitoring results the Consultant visit is poor value to everyone, not to mention travel costs, work hours lost and time wasted. Pre clinic information forms are a nice idea but in practice with our clinic waiting times of between 2-4 hours and clinicians battling with poor IT infrastructure, they probably won’t come into common use.

Core Data File The current consultation work by the Professional Records Standards Body to create the the core information standard, highlights may of the aspects that patients may want to record. The ‘about me’ section and other categories give a holistic overview of the patient situation, cognition, disabilities, social situation, carer role, and directives . At nearly every consultation we have to remind the clinician that my son is severely hearing and memory impaired and an on screen flag would simply change the flow of the meeting.

Access to booking systems. Enabling access to booking screens would allow patients to track appointments. So many times in our experience, for example, the promised imaging request wasn’t actioned because of misinformation or confusion over duplicate requests. Pressure on clinic time, short staffing, multiple requesters and process failure are the realities of NHS care. Appointment tracking would reduce patient stress, phone calls, delays in tests, treatment and administration time.

Linking in existing Health Apps. Linking in our existing records is important for us. Entering fourteen years of health data was a difficult task. Using a fully indexed record in an immediately accessible format which is searchable is irreplaceable. From start to finish I can access my son’s neurosurgical operation notes including imaging in just four clicks on my iPhone. The agility of existing Apps like Evergreen Life will be hard to beat for immediate information so link it into the LHCR. Extensibility is key.

Designing for people and understanding their needs.

As a carer I have frequent interaction with health services and I have a message to commissioners that don’t have the experience of using personal health records. The primary aim of an LHCR is to create longitudinal health records to enable safe and efficient care to the individual wherever they may be, at any time through fast secure access by both the individual and health providers. The primary function is not to make clinicians lives easier so the focus on citizen access, trust and control of that data must remain at the forefront of design and commissioning. This is our data, personal, private, important to our survival and ultimately should be within our control. We need to have trust in the process, the infrastructure and the services using our data in partnership with us. We want the choice to opt out or opt in, to see who has accessed our information and to withdraw consent at any time. We may want to keep some information private and should have the facility to choose how much of our information to reveal. We do not want to wait for an invitation from care providers to view OUR data as suggested by more than one solution, we want direct access via secure existing platforms like the NHS App.

Conclusion

The adoption and success of LHCR to improve health outcomes depends on designing the patient/public areas to provide real benefit to individuals. Understanding why and how we want to use our contributory areas of the record to create a comprehensive lifelong health account should be important to designers and commissioners alike. Public engagement programmes must work towards understanding the public view to avoid commissioning solutions that may have limited functionality and capability to meet peoples needs.

It should be a partnership exercise in design to change people’s lives for the better.