Patient's record - Personal health booklet (2) Health Literacy, digital access by patients to their records and patient activation

21 October, 2021

Massimo,

I have written about this issue today to Mrs Tlaleng-Mofokeng, the UN rapporteur on Human Rights for health https://www.ohchr.org/EN/Issues/Health/Pages/Tlaleng-Mofokeng.aspx. Perhaps more members could write too.

*Dr R. Fitton, The Old Vicarage, Crowden, Glossop, Derbyshire, SK131HS, England, richardpeterfitton7@gmail.com <richardpeterfitton7@gmail.com>, 07718901395*

To the Office of the United Nations High Commissioner for Human Rights (OHCHR)

Palais des Nations

CH-1211 Geneva 10, Switzerland

Re: Health Literacy, digital access by patients to their records and patient activation

Dear Ms Tlaleng-Mofokeng, A number of medical and patient colleagues are enjoying the benefits of patient accessed and patient shared medical records which modern mobile and digital technology supports and

facilitates. I have referenced our work below and we would be pleased to pas on further information about this process of patient and family engagement, health literacy, patient activation and partnership.

WHO health topics writes: “Universal health coverage (UHC) means that all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient

quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.

“This definition of UHC embodies three related objectives:

1. Equity in access to health services - everyone who needs services should get them, not only those who can pay for them;

2. The quality of health services should be good enough to improve the health of those receiving services; and

3. People should be protected against financial-risk, ensuring that the cost of using services does not put people at risk of financial harm.

Don Nutbeam <http://www.sciencedirect.com/science/article/pii/S0277953608004577> wrote in “social Science and Medicine, volume 67, issue 12, in his article “The evolving concept of health literacy”:

“The relationship between poor literacy skills and health status is now well recognized and better understood. Interest in this relationship has led to the emergence of the concept of health literacy. The concept has

emerged from two different roots – in clinical care and in public health. This paper describes the two distinctive concepts that reflect health literacy, respectively, as a clinical “risk”, or a personal “asset”. In the

former case a strong science is developing to support screening for poor literacy skills in clinical care and this is leading to a range of changes to clinical practice and organization.”

“The conceptualization of health literacy as an asset has its roots in educational research into literacy, concepts of adult learning, and health promotion. The science to support this conceptualization is less well

developed and is focused on the development of skills and capacities intended to enable people to exert greater control over their health and the factors that shape health.”

The model in which patients may access and user all of the data in their records assumes that the patient is a partner in the creation and governance of their lifelong medical record and an active participant in

the four main processes of their health and care:

1. Immediate care – mainly provided by patients themselves for minor problems and by trained staff for moderate to severe immediate problems

2. Continuing care – provided jointly by trained staff, patients and their families

3. Preventative care – provided mainly by trained staff

4. Public health and health promotion – provided mainly by citizens, their families and friends.

The Donabedian model provides a framework for examining health services and evaluating quality of health care <https://en.wikipedia.org/wiki/Health_care>. According to the model, information about quality of care can be drawn from three categories:

“structure,” “process,” and “outcomes”. Patient access to records assumes that increasingly the citizen will be health literate and will be a major partner in the four areas of his and public health and care. It assumes

that the citizen will have access to the same information and understanding that professionals have.

References:

A. https://www.who.int/teams/integrated-health-services/patient-safety/poli...

“What principles will guide implementation?

Seven guiding principles establish underpinning values to shape the

development and implementation of the action plan:

-engage patients and families as partners in safe care

- achieve results through collaborative working

- analyse and share data to generate learning

- translate evidence into actionable and measurable improvement

- base policies and action on the nature of the care setting

- use both scientific expertise and patient experience to improve safety

- instil a safety culture in the design and delivery of health care

B. https://www.who.int/reproductivehealth/topics/mhealth/en/ Digital health WHO releases first guideline on digital health interventions

C. https://www.rcgp.org.uk/patientonline The Patient Online toolkit has been written by the RCGP, in collaboration with NHS England, for GPs, nurses and practice staff to offer Patient Online to patients effectively,

efficiently, safely and securely. The toolkit also includes clinical exemplars which demonstrate how Patient Online can empower patients to take greater control of the management of their health conditions as part of a

person-centred approach to care.

D. https://www.research.manchester.ac.uk/portal/en/publications/culture-and...(10008a87-a14a-4b0a-8ee2-071f2653aaab)/export.html

E. Accessing personal medical records online: a means to what ends? - PubMed (nih.gov) <https://pubmed.ncbi.nlm.nih.gov/25453275/>

*Background: *Initiatives in the UK to enable patients to access their electronic health records (EHRs) are gathering momentum. All citizens of the European Union should have access to their records by 2015, a target

that the UK has endorsed.

*Objectives: *To identify the ways in which patients used their access to their EHRs, what they sought to achieve, and the extent to which EHR access was related to the concept of making savings.

F. The impact of patient record access on appointments and telephone calls in two English general practices: a population-based study: London Journal of Primary Care: Vol 6, No 1 (tandfonline.com)

<https://www.tandfonline.com/doi/abs/10.1080/17571472.2014.11493405> G. https://bjgp.org/content/68/suppl_1/bjgp18X697133 Testing the health literacy of twenty Bangladeshi patients before and 5 months after they

begin to access their GP electronic record

Yours Sincerely, Dr Richard Fitton

HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data

Email address: richardpeterfitton7 AT gmail.com