Online public information about advance care planning: An evaluation of UK and international websites

Introduction Healthcare information is increasingly internet-based. Standards require websites to be ‘perceivable, operable, understandable and robust’ with relevant content for citizens in appropriate language. This study examined UK and international websites offering public healthcare information on advance care planning (ACP) using current recommendations for website accessibility and content and informed by a public engagement exercise. Methods Google searches identified websites in English from health service providers, governmental or third sector organisations based in the UK and internationally. Target keywords that would be used by a member of the public informed the search terms. Data extraction used criterion-based assessment and web content analysis of the first two pages of each search result. Public patient representatives as key members of the multidisciplinary research team guided the development of the evaluation criteria. Results A total of 1158 online searches identified 89 websites, reduced to 29 by inclusion/exclusion criteria. Most sites met international recommendations for knowledge/understanding about ACP. Differences in terminology, lack of information about ACP limitations and non-adherence to recommended reading levels, accessibility standards and translation options were apparent. Sites targeting members of the public used more positive, non-technical language than those for both professional and lay users. Conclusions Some websites met accepted standards required to facilitate understanding and public engagement in ACP. Others could be improved significantly. Website providers have important roles and responsibilities in increasing people's understanding of their health conditions, future care options and ability to take an active role in planning for their health and care.

[1]  J. Zeredo,et al.  The use of natural language processing in palliative care research: A scoping review , 2022, Palliative medicine.

[2]  Z. Fritz,et al.  Towards cataloguing and characterising advance care planning and end-of-life care resources , 2022, BMC Palliative Care.

[3]  E. Finlayson,et al.  Missed Opportunities and Health Disparities for Advance Care Planning Before Elective Surgery in Older Adults. , 2022, JAMA surgery.

[4]  C. Urch,et al.  Co-designing an intervention to increase uptake of advance care planning in later life following emergency hospitalisation: a research protocol using accelerated experience-based co-design (AEBCD) and the behaviour change wheel (BCW) , 2022, BMJ Open.

[5]  A. De Vleminck,et al.  Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review , 2022, Journal of medical Internet research.

[6]  R. Sudore,et al.  Caught in a Loop with Advance Care Planning and Advance Directives: How to Move Forward? , 2022, Journal of palliative medicine.

[7]  D. Barnes,et al.  Surrogate Decision Makers Need Better Preparation for Their Role: Advice from Experienced Surrogates. , 2022, Journal of palliative medicine.

[8]  S. Claflin,et al.  Assessing the Impact of Online Health Education Interventions From 2010-2020: A Systematic Review of the Evidence , 2021, American journal of health promotion : AJHP.

[9]  R. Rintoul,et al.  Communicating uncertainty: contrasting the communication experiences of patients with advanced COPD and incurable lung cancer. , 2021, Family practice.

[10]  R. Sudore,et al.  Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review , 2020, Journal of the American Geriatrics Society.

[11]  A. Back,et al.  Public Perceptions of Advance Care Planning, Palliative Care, and Hospice: A Scoping Review. , 2020, Journal of palliative medicine.

[12]  Mark Taubert,et al.  Advance care planning re-imagined: a needed shift for COVID times and beyond , 2020, Palliative care and social practice.

[13]  S. Barclay,et al.  Reassessing advance care planning in the light of covid-19 , 2020, BMJ.

[14]  I. Korfage,et al.  Advance care planning: the future , 2020, BMJ Supportive & Palliative Care.

[15]  S. Barclay,et al.  Advance care plans and hospitalized frail older adults: a systematic review , 2020, BMJ Supportive & Palliative Care.

[16]  Anastazia Zunic,et al.  Sentiment Analysis in Health and Well-Being: Systematic Review , 2020, JMIR medical informatics.

[17]  M. Suarez‐Almazor,et al.  A comprehensive scoping review to identify standards for the development of health information resources on the internet , 2019, PloS one.

[18]  G. Schmiemann,et al.  Experiences and involvement of family members in transfer decisions from nursing home to hospital: a systematic review of qualitative research , 2019, BMC Geriatrics.

[19]  K. de Vries,et al.  Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy , 2019, Nursing ethics.

[20]  I. Korfage,et al.  Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness , 2018, Palliative medicine.

[21]  Elisabeth Beaunoyer,et al.  Understanding online health information: Evaluation, tools, and strategies. , 2017, Patient education and counseling.

[22]  D. Fetherstonhaugh,et al.  Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide? , 2016, Journal of Medical Ethics.

[23]  Matthew Dunn,et al.  Health literacy and the Internet: a study on the readability of Australian online health information , 2015, Australian and New Zealand journal of public health.

[24]  Michael J. Miller,et al.  Assessing readability formula differences with written health information materials: application, results, and recommendations. , 2013, Research in social & administrative pharmacy : RSAP.

[25]  D. Meier,et al.  Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus. , 2018, Journal of pain and symptom management.